National Breast Cancer Research Summit

Mapping the Future

Canadian Breast Cancer Research Alliance
Alliance canadienne pour la recherche sur le cancer du sein

National Breast Cancer Research Summit

Mapping the Future

May 26 - 27, 2008 . Toronto . Canada

Hosted by

Canadian Breast Cancer Research Alliance
Alliance canadienne pour la recherche sur le cancer du sein

CBCRA Members

CBCRA Friends

National Breast Cancer Research Summit

Mapping the Future

May 26 - 27, 2008 . Toronto . Canada

The Canadian Breast Cancer Research Alliance gratefully acknowledges additional support for this meeting from the Canadian Institutes of Health Research Institute of Cancer Research through a Meetings, Planning & Dissemination Grant: Cancer Research

Mapping The Future
Tab
Annotated Agenda Participants List Executive Summary Key Findings

Item
Annotated Agenda Participants List Executive Summary Synthesis of top breast cancer research priorities identified by CSO codes Introduction Results Policy Influencers’ Perspectives on Breast Cancer Research Summary Table Breast Cancer Research Priorities: A Summary of a Survey of Organizations Funding Breast Cancer Research in Canada and Related Key Informant Interviews Preface Summary Table Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer Summary Table Canadian Breast Cancer Researcher Priorities Summary Table State of the Research Reports: Early Detection Epidemiology/Prevention Knowledge Translation/Health Services/Policy/Ethics Molecular Biology and Signal Transduction Molecular Pathology Psychosocial Oncology Treatment and Clinical Trials Tumour Microenvironment and Metastasis Canadian Breast Cancer Research System Gaps Summary Analysis Internationally Identified Breast Cancer Research Priorities Summary Table

Page
1 3 7 11 20 24 28

34 38 42 47 51 59 63 69 70 71 74 75 76 77 78 79 80 81 88

Worksheets About CBCRA Other

National Breast Cancer Research Summit | Table of Contents

May 26 - 27, 2008 . Toronto . Canada Zermatt Room, Sheraton Gateway Hotel Pearson International Airport Terminal 3, Toronto

Agenda
1. To develop the first cut of a national breast cancer research framework, including identification of: • Pan-Canadian research priorities for new or enhanced funding across the cancer continuum • Gaps and opportunities across the breast cancer research system • Principles to guide funding collaboration • Preliminary opportunities for collaborative activity among funders 2. To develop an initial approach to move the framework into action, consisting of: • Agreement as to how framework will be finalized, shared and refreshed • Discussion of possible contribution of CBCRA and other players.

Desired Outcomes
• Shared commitment to the benefits of developing a national breast cancer research framework and agreement to work together. • A frank and open discussion of what it will take to achieve these desired benefits. • A compelling action agenda for making progress: plans for moving forward, agreed areas of focus, partnership opportunities, collaborations, new models.

Monday May 26, 2008
1:00 – 2:00 p.m. 2:00 – 2:30 p.m. Registration Getting Started Refreshments available Welcome and introductions from Chair of CBCRA Board of Directors and Co-Chairs of the National Summit Mr. Leslie Cox, Drs. Moira Stilwell and Phil Branton Update on the breast cancer research opportunities that are being pursued internationally with particular reference to the Top 10 list Presentation followed by Q&A Reference: International Section of Key Findings Chapter Speaker: TBD Create the platform from which to dream by appreciating the accomplishments to date. Opportunity for participants to get to know each other while reflecting on the factors leading to successful collaborations and to determine the elements of a national breast cancer research framework. Reference: Key Findings Chapter in pre-meeting materials Drs. Moira Stilwell and Jane Cooke-Lauder Health break with opportunity for networking Delivery of a ‘state of the union’ report card on breast cancer research in Canada Presentation followed by Q&A Reference: Results Section of Key Findings Chapter Speaker: Dr. Kathy Pritchard In small groups and in plenary, participants will identify the longer term outcomes to be achieved by having a national breast cancer research framework in place Reference: Introduction of Key Findings Chapter in pre-meeting materials Drs. Moira Stilwell and Jane Cooke-Lauder Location of Hospitality Suite will be announced

2:30 – 3:30 p.m.

Describing the International Context

3:30 – 5:30 p.m.

Exploring the Canadian Context - Part 1

4:00 – 4:30 p.m 5:30 – 6:30 p.m

Break Exploring the Canadian Context - Part 2

6:30 – 7:30 p.m 7:30 – 9:00 p.m

Dinner Daring to Dream

9:00 p.m.

Adjournment

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Tuesday May 27, 2008
7:30 – 8:00 a.m 8:00 – 8:30 a.m Breakfast Welcome Back Recap of the highlights from Day 1 Review of agreed outcome statements from the previous evening Drs. Phil Branton and Jane Cooke-Lauder Identification of the areas/opportunities that are seen as having specific potential in the Canadian milieu, and those that require collaboration. Highlights from the data gathering: a brief presentation Small group work to identify research priorities that will have an impact/achieve the outcomes as defined Reference: Results Section of Key Findings Chapter in pre-meeting materials Dr. Moira Stilwell, Ms. Nicola Lewis, Dr. Jane Cooke-Lauder Discussion in plenary of: 1. The most compelling research priorities and the ones where there is interest in working together 2. The critical elements of the current breast cancer research system that will need to be in place in order for success to be achieved? Session Chair: Dr. Elizabeth Eisenhauer Agreement as to the most useful principles to have in place to guide collaborative initiatives among funders. Combination of presentation, small group work and plenary discussion Reference: Introduction of Key Findings Chapter Dr. Jane Cooke-Lauder Discussion on how to bring this first attempt at national planning to closure, monitor implementation/adoption and how to identify research priorities and opportunities to collaborate on an ongoing basis. Presentation of some initial ideas from CBCRA Small group work to identify action steps and roles and responsibilities moving forward Drs. Moira Stilwell, Barbara Whylie and Jane Cooke-Lauder Call to action Drs. Moira Stilwell and Phil Branton Mr. Leslie Cox

8:30 – 9:45 a.m

Daring to Dream (Continued)

9:45 – 10:15 a.m 10:15 a.m.

Break Defining Success and Creating the Necessary Conditions

12:00 – 1:00 p.m. 1:00 – 1:45 p.m.

Lunch Creating the Conditions for Success (Continued)

1:45 – 3:15 p.m.

Developing Agreements

3:15 – 3:30 p.m. 3:30 p.m.

Coming to Closure Adjournment

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Mapping The Future
Participants List
Dr. Samuel Aparicio Head, Molecular Oncology and Breast Cancer Program BC Cancer Research Centre Member, CBCRA Research Advisory Committee Vancouver, BC Ms. Julie Bettney Board of Directors Canadian Breast Cancer Foundation, Atlantic Region Mount Pearl, NL Ms. Barbara Boyd Senior Director of Finance Pepsi Bottling Group Member-at-large, CBCRA Board of Directors Mississauga, ON Ms. Krista Connell Chief Executive Officer Nova Scotia Health Research Foundation Halifax, NS Dr. Jane Cooke-Lauder (Facilitator) President and CEO Bataleur Enterprises Inc. Toronto, ON Mr. Leslie Cox Avon Canada Chair, CBCRA Board of Directors Sun City Center, FL Ms. Mary-Jo DeCoteau Executive Director ReThink Breast Cancer Toronto, ON

Dr. Phil Branton Scientific Director Canadian Institutes of Health Research - Institute of Cancer Research Member, CBCRA Board of Directors Dr. Shoukat Dedhar Montreal, QC Senior Scientist Cancer Genetics and Developmental Biology Ms. Barbara Cameron BC Cancer Research Centre Patient Representative Member, CBCRA Research Advisory Committee Alberta Cancer Board Vancouver, BC Calgary, AB Ms. Linda Eagen Dr. Svein Carlsen President and Chief Executive Officer Vice-President, Research Ottawa Regional Cancer Foundation Saskatchewan Cancer Agency Ottawa, ON Saskatoon, SK Dr. Elizabeth Eisenhauer Dr. Carol Cass President, Board of Directors Director National Cancer Institute of Canada Cross Cancer Institute Member, CBCRA Board of Directors Edmonton, AB Kingston, ON Dr. Mario Chevrette President The Cancer Research Society Montreal, QC Dr. Stephen Chia Chair, British Columbia Breast Tumour Group BC Cancer Agency Vancouver, BC The Honourable Mary Collins, P.C. Director BC Healthy Living Alliance Secretariat Vancouver, BC Ms. Jan Engemoen Chief Executive Officer Canadian Breast Cancer Foundation, BC/Yukon Region Vancouver, BC Ms. Diana Ermel President Canadian Breast Cancer Network Member, CBCRA Board of Directors Regina, SK

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Dr. Mary Jane Esplen Clinician Scientist, Behavioural Sciences & Health Research Division University Health Network Toronto, ON Dr. Margaret Fitch Associate Scientist, Clinical Epidemiology Sunnybrook Research Institute Toronto, ON Ms. Colleen Fleming Chief Executive Officer Canadian Breast Cancer Foundation, Central Office Member, CBCRA Board of Directors Toronto, ON Ms. Sandra Fusco Community Representative Ile-Bizard, QC Dr. Karen Gelmon Head, Investigational Drug Program Department of Advanced Therapeutics BC Cancer Agency Vancouver, BC Ms. Pamela Goldberg Chief Executive Breast Cancer Campaign London, UK Mr. Peter Goodhand Chief Executive Officer Canadian Cancer Society - Ontario Division Toronto, ON Ms. Susan Goodman Member, CBCRA Research Advisory Committee Toronto, ON Dr. Pam Goodwin Senior Scientist, Samuel Lunenfeld Research Institute Director, Marvelle Koffler Breast Cancer Toronto, ON Dr. Jane Green Professor, Discipline of Genetics Memorial University of Newfoundland Member, CBCRA Research Advisory Committee St. John’s, NL

Dr. Eva Grunfeld Director, Cancer Outcomes Research Cancer Care Nova Scotia Halifax, NS Dr. Thomas Hack Associate Professor Faculty of Nursing University of Manitoba Member, CBCRA Research Advisory Committee Winnipeg, MB Ms. Lois Harrison Director of Health Promotion and Grant Allocation Canadian Breast Cancer Foundation, Prairies/NWT Region Edmonton, AB Ms. Jessica Hill Chief Executive Officer Canadian Partnership Against Cancer Toronto, ON Ms. Carol Hiscock Board Member Canadian Cancer Society Member, CBCRA Board of Directors Winnipeg, MB Dr. Claire Holloway Associate Scientist and Surgical Oncologist Sunnybrook Health Sciences Centre Member, CBCRA Research Advisory Committee Toronto, ON Dr. Tom Hudson President and Scientific Director Ontario Institute for Cancer Research Toronto, ON Dr. Joy Johnson Scientific Director Canadian Institutes of Health Research - Institute of Gender and Health Vancouver, BC Ms. Sherry Johnston Executive Director Breast Cancer Society of Canada Sarnia, ON Captain Melissa Kaime Deputy Director, CDMRP US Department of Defense Fort Detrick, Maryland

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Mapping The Future
Dr. Eshwar Kumar Co-Chief Executive Officer New Brunswick Cancer Network Fredericton, NB Ms. Roberta Lacey Director, Communications, Public Relations, and Events Avon Canada Member, CBCRA Board of Directors Montreal, QC Ms. Nathalie Le Prohon Board Member Fondation du cancer du sein du Québec Westmount, QC Dr. Victor Ling Scientific Director Terry Fox Research Institute Vancouver, BC Dr. Benoît Lussier Acting Executive Director Canadian Cancer Research Alliance Montreal, QC Dr. Sylvie Mader Professor Institute for Research in Immunology and Cancer University of Montreal Member, CBCRA Research Advisory Committee Montreal, QC Dr. Jacques Magnan Interim President and Chief Executive Officer Alberta Heritage Foundation for Medical Research Edmonton, AB Dr. Tak Mak Director Campbell Family Institute for Breast Cancer Research Toronto, ON Ms. Jackie Manthorne Executive Director Canadian Breast Cancer Network Member, CBCRA Board of Directors Ottawa, ON Dr. Katherine McKenzie Manager: External Relations; Biomedical Research Administrator California Breast Cancer Research Program Oakland, CA Dr. John McLaughlin Vice-President, Population Studies & Surveillance Cancer Care Ontario Toronto, ON Dr. Anne-Marie Mes-Masson Director FRSQ Cancer Research Network Montreal, QC Ms. Lori Messer National President Canadian Cancer Society Toronto, ON Ms. Dianne Moore Director, Canadian Breast Cancer Network Community Representative Windsor, ON Ms. Cindy Moriarty Acting Director Bureau of Women’s Health and Gender Analysis Health Canada Ottawa, ON Dr. William Muller CRC Chair in Molecular Oncology Professor, Departments of Biochemistry and Medicine McGill University Montreal, QC Dr. Leigh Murphy Director Manitoba Breast Cancer Research Group Winnipeg, MB Dr. Tim Murphy Senior Vice President, Corporate Services and Programs Michael Smith Foundation for Health Research Vancouver, BC Ms. Judy Needham Community Representative Langley, BC Dr. Benjamin Neel Director Ontario Cancer Institute Toronto, ON

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Dr. Maureen O’Connor-McCourt Group Leader, Receptors, Signalling & Proteomics NRC Biotechnology Research Institute Montreal, QC Dr. Ivo Olivotto Chief Physician & Head of Radiation Oncology BC Cancer Agency Vancouver Island Cancer Centre Chair, CBCRA Research Advisory Committee Victoria, BC Dr. Morag Park Director, Molecular Oncology Group McGill University Health Center Incoming Member, CBCRA Board of Directors Montreal, QC Dr. Cathy Popadiuk Professor of Medicine Memorial University of Newfoundland Member-at-large, CBCRA Board of Directors St. John’s, NL Dr. Kathy Pritchard Senior Scientist Sunnybrook Health Sciences Centre Toronto, ON Dr. Brent Schacter Chief Executive Officer Canadian Association of Provincial Cancer Agencies Winnipeg, MB Ms. Sharon Smith Director of Cancer Care Eastern Health St. John’s, NL Dr. Moira Stilwell Co-Medical Director of Breast Health BC Women’s Hospital and Health Centre Member, Canadian Breast Cancer Foundation National Board Member, CBCRA Board of Directors Vancouver, BC Dr. Michel Tremblay Director McGill Cancer Centre Montreal, QC Ms. Theresa Marie Underhill Chief Operating Officer Cancer Care Nova Scotia Halifax, NS

Ms. Lianne Vardy Director, Chronic Disease Management Division Public Health Agency of Canada Member, CBCRA Board of Directors Ottawa, ON Ms. Linda Venus Vice-Chair, CBCRA Research Advisory Committee Winnipeg, MB Dr. Barbara Whylie Chief Executive Officer Canadian Cancer Society Member, CBCRA Board of Directors Toronto, ON Ms. Sharon Wood Chief Executive Officer Canadian Breast Cancer Foundation, Ontario Region Member, CBCRA Board of Directors Toronto, ON Dr. Michael Wosnick Executive Director National Cancer Institute of Canada Member, CBCRA Board of Directors Toronto, ON Dr. Martin Yaffe Senior Scientist Sunnybrook Health Sciences Centre Toronto, ON

CBCRA Secretariat
Ms. Nicola Lewis Executive Director Dr. Pascale Macgregor Research Program Director Ms. Janet Patterson Communications Manager Ms. Susan Wall Co-ordinator, Conferences and Meetings Ms. Pat McAulay Program Administrator Ms. Megan Gaucher Program Assistant

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Mapping The Future
Executive Summary
Stakeholders agree to the importance of developing a national breast cancer research framework at this time. While significant advancements in breast cancer research, screening and treatment have been achieved and incidence and mortality rates continue to decline, female breast cancer rates in Canada remain amongst the highest in the world1. The partners of the Canadian Breast Cancer Research Alliance (CBCRA) have invited some 70 breast cancer leaders – funders, survivors, policy influencers, researchers, community advocates - as well as influential international guests, to gather in Toronto on May 26 and 27, 2008. The purpose of this National Summit is to develop a shared vision of a pan-Canadian breast cancer research framework that will anticipate and be responsive to new scientific opportunities and challenges, and improve co-ordination of breast cancer research efforts. In anticipation of this event, CBCRA commissioned several background data gathering projects to level the playing field in terms of knowledge of current breast cancer initiatives. Input has been solicited from researchers, policy influencers, survivors and funders on a number of topics germane to the future of breast cancer research. They were asked to identify research priorities, comment on the overall ‘health’ of the breast cancer research system, indicate what was needed in a national framework and opine on who needs to be involved in its development. Results of these conversations are presented, briefly, below. More information is available in the sections following in this binder. The full reports and other related information is available on the CBCRA website (www.breast.cancer.ca).

Introduction

Creating the National Breast Cancer Framework

Global complementarity is one of the requirements for a Canadian national framework. Stakeholders are clear. They are looking for a visionary plan that creates the opportunity for Canada to become known as an international player in a number of new areas, building off acknowledged existing strengths. They are also looking for a plan that does not duplicate what is being done abroad, but rather has a unique ‘Canadian’ flavor to it. The plan must also not ‘tell others what to do’. It should describe a minimal and an optimal level – providing opportunity to collaborate but not force fitting a strategy onto any other organization. Stakeholders are also expecting the framework to be focused on clear goals and, to have measurable outcomes, while also demonstrating the case for further excellent research and research funding. Initial data gathering efforts to identify recent breast cancer research prioritization initiatives in other jurisdictions resulted in learnings about international, UK and US projects occurring within the last 18 months. Further information about these is included in the binder – and a plenary session at the Summit has been dedicated to helping all participants better understand some of the international strengths and gaps as an important backdrop to the development of the Canadian framework.

Stakeholder Priorities

Included in this binder are summaries of the current breast cancer research issues that are of concern to stakeholders. The binder materials provide participants with recent insights, areas of consensus and of disagreement in order to level the playing field of knowledge coming into the Summit. All participants, regardless of their backgrounds, will have had the opportunity to hear the voice of stakeholders through this data. Conversations at the Summit are designed to build off this awareness to arrive, through engagement and dialogue, at some consensus around a small number of focus areas. Summaries of these data gathering exercises are available in the binder, together with summary tables and a link to the full report on the website. What follows are the highlights of each together with the highest level analysis of the data. This analysis is presented in table format, titled Synthesis of Top Breast Cancer Research Priorities Identified by CSO Codes, and provides a ‘snapshot’ overview of the consolidated dataset. Within the overall organizing framework of the Common Scientific Outline (CSO), the following information is provided: • Linkages to the Cancer Control Continuum (Column 1) • Funding sources and the scale of funding by CSO category (Column 2) • Within the CSO category, the prioritized CSO codes are listed (based on a detailed analytical exercise) that appear to be most favoured by all stakeholder groups (Column 3) • Examples of the types of issues and research questions identified by stakeholders are then put forward (Column 4) • The final two columns include information identifying which stakeholder group prioritized the code (Column 5), and lastly the relevant international priorities corresponding to the prioritized CSO code are listed (Column 6).
1

Canadian Cancer Statistics, 2007

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Highlights from the Researchers

The results from two separate data gathering initiatives have been used to identify researcher priorities: the workshop held by CBCRA in December, 2006 and the Summit hosted by NCIC in May, 2007. Both initiatives had input from a group broader than researchers but the predominant attendees and sources of information were the researcher group. NCIC used a key informant interview approach to identify themes (breakthroughs, barriers and immediate opportunities) that were presented at the workshop. CBCRA requested acknowledged leaders in eight different research areas to produce ‘state of the research’ overviews and conducted an international scan of breast cancer funding agencies. NCIC’s participants included a higher percentage of clinicians. Not surprising, the priorities identified focused on screening, prevention and treatment, but also acknowledged the importance of biological and system modeling research. Participants at the CBCRA workshop reached consensus around 19 priorities (listed in the Key Findings section under researchers). Areas of commonality across the two data sets include: • Biomarkers; targeted and tailored treatment • Improved screening tools and programs • Knowledge translation • Risk reduction/prevention • Metastatic breast cancer • Survivorship and psychosocial interventions • Consideration of marginalized and sub-populations.

Highlights from the Policy Influencers

15 semi-structured, telephonic interviews were held with individuals either setting or influencing policy related to breast cancer at different levels and in different jurisdictions across Canada. Their issues and interests cluster logically into the following key areas: • Etiology and trying to find a cure • Prevention and Early Detection: in the absence of a cure, a focus on preventing and particularly, screening • Delivery of Health Care and the associated cost: included in this cluster is knowledge translation and communication. Policy influencers are also interested in learning more about complementary and alternative approaches. Policy influencers strongly support the need for a national breast cancer research framework. They see value in bringing the different actors together to facilitate better understanding across the system and better coordination of actions. They also support an inclusive approach to the development of the framework and the involvement of organizations such as CBCRA, CCRA, CIHR, PHAC, CPAC and CAPCA. In terms of their own role and changes to the research system, there is a strong call for a ‘regularization and formalization’ of interaction among policy influencers, researchers and stakeholders.

Highlights from the Survivors

808 responses were received to a bilingual web-based survey developed based on existing literature and expert input, and tested rigorously prior to launch with survivors. There are some limitations to the data in that respondents were of a younger age than the norm in the population. However, statistical tests demonstrate no differences in opinions according to the age category of the respondent. There are some small regional differences in the data (e.g., English language respondents gave higher ratings to risk factors and prevention than their French language counterparts who rated treatment more highly) as well as some similar small differences based on the respondent’s experience with breast cancer. The predominant focus for this stakeholder group is on prevention, screening and treatment. They are also concerned about health system and service issues (for example: issues of waiting times; coordination/integration; financial barriers; supply of qualified people; wide variation in protocols and quality of services; significant challenges in rural/remote areas; the knowledge; and communication skills of physicians and other professionals working with women going through the trauma of the diagnostic and treatment experience). Specific areas of special concern include:

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Mapping The Future
• The broad topic of breast cancer and younger women within the categories of prevention, screening, treatment, supportive care, and health services/systems. • The importance of research on metastatic cancer • The issue of psychosocial and other supports needed before, during and after treatment • More research into environmental causes and risk factors. • More research on a wide range of alternative and complementary treatment approaches.

With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern about the slow progress on many important issues and the need to focus research efforts.

Highlights from the Funders

In 2006, at least $49.5 M (12% of the total funding in cancer research) was invested in breast cancer research as tracked by CCRA. Monies associated with such fund raising initiatives as the Weekend to End Breast Cancer are not included in this figure. The focus of the funding is predominantly in the area of biology (40%) with etiology, early detection, treatment and cancer control survivorship and outcomes each receiving about 15% of the available funds. Some 2% is spent on prevention research. Two complementary data gathering approaches were used to obtain funder input: a web-based survey which received a 35% response rate, supplemented by 13 key informant interviews. The stratified interview sample was created based on a selection of leaders in breast cancer funding agencies across the spectrum: national, provincial, research institutes, cancer care agencies and cancer foundations. Current priorities for funders include: risk factors and prevention, treatment, developing research capacity and laboratory/basic research. In rating the previously identified 19 priorities (see researcher section), their highest priorities are biomarkers, metastases and knowledge translation. They are also concerned about health care delivery. Their emerging priorities and/or areas of concern include: genetics related research, the impact of environmental risk factors, increasing the amount of translational research and expanding the focus on metastasisrelated research. Most funders have some experience with collaboration. Thoughtful suggestions were put forward with respect to building successful collaborations that could provide guidance to the development of a set of collaboration principles moving forward. 77% of the funders support the development of the national breast cancer research framework, with a particular request that the framework is positioned within a global context. They expect it to be comprehensive, while providing sufficient specificity and clarity of direction. Including a knowledge translation component is described as being a priority. Identified gaps to be addressed in the research system in order to facilitate the delivery of world-class breast cancer research include: funding for multi-disciplinary teams; increasing the number of team grants; increasing the number of clinician/scientists and developing breast cancer research leaders.

System gap analysis

Stakeholders were asked what is needed to change about the current way breast cancer research is funded, resourced, planned, taught, communicated, monitored, and evaluated in order for Canada to become more internationally competitive. Identified gaps include making changes to some of the ways research is funded, improving accessibility to tumor banks and finding ways to move research findings into practice more quickly and more efficiently.

Pulling it all Together

Information provided in this binder will be used to inform discussions during the Summit. Plenary and small group sessions will be supported by the rich set of perspectives included here – and will build off these foundational stakeholder views. What we have to-day are identified priorities – developed by thoughtful concerned individuals. Through the Summit process, we expect to translate these into a few agreed areas for action. Specifically, the Summit agenda calls for participants to review these materials and come prepared to share their perspectives on the future of breast cancer research in Canada, including the kinds of outcomes that need to be achieved that will differentiate Canada from other nations, build on our strengths and maximize Canada’s contribution to reducing the global impact of breast cancer.

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives (I) DCIS to progression: determine the factors in DCIS and/or ADH leading to progression into invasive carcinoma (I) Gene mutations responsible for metastasis: investigate which gene mutations in a cancer lead to metastases
(II) Gain a greater understanding of the genetic changes that occur within atypias and DCIS (theme #2 Initiation of breast cancer) (II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer) (II) Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer) (II) Increase research efforts into the role of the tumour microenvironment and the immune system in the development and treatment of breast cancer (theme #4 Therapies and targets in breast cancer)

2

3

Level of Funding for Category* and Known Funders (>$100k)
40% BCCA CBCRA CIHR TFF/NCIC CCS/NCIC CBCF Fondation du cancer du sein du Québec FRSQ NRC OICR Saskatchewan Cancer Agency The Cancer Research Society

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• Early detection of metastasis disease, if oligometastatic disease is treatable with curable intent • Does the ability to metastasize develop during growth at the primary site? •

Listing of Stakeholders prioritizing this Code
Researchers: SRAW, NCIC Summit Survivors Funders

1. Biology *Prevention *Diagnosis *Treatment

1.4 Cancer progression and metastasis

Tumor dormancy

• Risk/prevention of recurrence; why recurrence after 5 years? Policy Influencers’

Finding new ways to ensure that Breast Cancer Research cancer that spreads to other parts of the body is found early

Perspectives on

CSO Code³

Policy Influencers’ Perspectives on Breast Cancer Research

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives
(II) Improve preclinical models (Generic needs #1) (II) Cross-disciplinary working (Generic needs #3) (II) Develop three-dimensional cell culture models, containing multiple cell types, which reflects the tissue architecture of the normal and diseased breast (theme #2 Initiation of breast cancer) (II) Generate better animal models, particularly for ER-positive tumours, in which gene expression can be manipulated in all cell types of the mammary gland and will not be altered by transdifferentiation or dedifferentiation (theme #2 Initiation of breast cancer)

2

3

Level of Funding for Category* and Known Funders (>$100k)
1% CBCRA

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• Animal models of BC progression Breast cancer modeling

Listing of Stakeholders prioritizing this Code
Researchers: SRAW

7. Scientific model systems *Prevention *Diagnosis *Treatment

7.1 Development and characterization of model system

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives (III) Ethnic, racial and other disparities in breast cancer incidence and survival (III) Intersection of multiple factors that impact breast cancer

2

3

Level of Funding for Category* and Known Funders (>$100k)
15% CBCRA CIHR Fondation du cancer du sein du Québec CBCF TFF/NCIC

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
Exposure to risk factors: biomarkers of exposure to risk factors (environment) through long term cohort studies
• How the food we eat, body weight and exercise relate to the risk of breast cancer • Why is breast cancer among young women/pre-menopausal increasing? • What are the key causes of breast cancer generally across the population and within certain cultural groups?

Listing of Stakeholders prioritizing this Code
Researchers: SRAW, NCIC Summit Survivors Policy makers Funders

2. Etiology *Prevention *Diagnosis

2.1 Exogenous factors in the Origin and Cause of Cancer

3. Prevention *Prevention *Treatment

2% CBCF

3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk 3.2 Nutritional science in cancer prevention 3.3 Chemoprevention

Lifestyle influence on breast cancer: How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level, including in sub-populations? • Exposure to risk factors: biomarkers of exposure to risk factors (environment) through long term cohort studies • Clinical prevention trials in genetically high risk women • Behavioural interventions to reduce risk • What population-based interventions can be introduced to reduce breast cancer incidence? • Pharmaco prevention

Researchers: SRAW, NCIC Summit, Vision 2020 BC Survivors Policy makers Funders (Prevention a Current Priority with Environmental causes seen as an Emerging Priority)

(II) Improve risk prevention models (theme #6 Prevention of breast cancer) (II) Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer)

(III) Environmental links to breast cancer (III) Ethnic, racial and other disparities in breast cancer incidence and survival (III) Intersection of multiple factors that impact breast cancer

4. Early detection, diagnosis and prognosis *Screening

13% CBCRA CBCF CIHR

4.1 Technology development and/or marker discovery 4.2 Technology and/or

Biomarkers: identification of the molecular basis/biomarkers of progression, to target therapies or imaging and to understand and predict progression • Breast cancer subtypes: better appreciation of the functional

Researchers: SRAW, NCIC Summit, Vision 2020 BC Survivors Funders (Early Detection a

(I) Molecular signatures: Identification of molecular signatures to select patients who could be spared chemotherapy

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives (I) Optimal chemotherapy: Identify molecular features which indicate the optimal chemotherapy regimen (eg combination or sequential; anthracyclin or not; taxane or not)
(II) Improve preclinical models, research reagents and technologies (including imaging) (theme #3 Progression of breast cancer) (II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer) (II) Design innovative trials and translational studies to develop and evaluate predictive and prognostic markers (theme #5 Disease markers in breast cancer) (II) Develop close multidisciplinary collaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome (theme #5 Disease markers in breast cancer) (II) Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer)

2

3

Level of Funding for Category* and Known Funders (>$100k)
NRC OICR TFF/NCIC

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
meaning of breast cancer subtypes (e.g., “triple negative” breast cancer) and implications breast cancer progression and for treatment across populations
• Lifestyle influence on breast cancer: How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level? • Better screening tools, including for genetically high risk women • •

Listing of Stakeholders prioritizing this Code
current priority with Genomics seen more as an Emerging Priority)

4. Early detection, diagnosis and prognosis (cont.) *Treatment *Diagnosis

marker evaluation with respect to fundamental parameters of method 4.3 Technology and/or marker testing in a clinical setting

Advances in basic research Molecular imaging

• Alternative detection methods such as serum-based markers

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives (I) Triple negative breast cancer: Identify response/resistance mechanisms and thereby therapeutic targets for triple negative breast cancer (I) No adjuvant therapy : Identifying which low risk patients require NO adjuvant therapy (I) Endocrine resistance: Identify drugable targets that can be developed/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance

2

3

Level of Funding for Category* and Known Funders (>$100k)
15% CBCRA CIHR CBCF BCCA CCS/NCIC NRC OICR

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• Microenvironment of metastatic breast cancer: therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment • BC subtypes: better appreciation of the functional meaning of breast cancer subtypes (e.g., “triple negative” breast cancer) and implications for treatment across populations •

Listing of Stakeholders prioritizing this Code
Researchers: SRAW, NCIC Summit, Vision 2020 BC Survivors Funders (Targeted therapies and Genomics seen as Emerging Priorities)

5. Treatment *Treatment

5.1 Localized therapies: discovery and development 5.2 Localized therapies: clinical applications 5.3 Systemic therapies: discovery and development 5.4 Systemic therapies: clinical applications

Phase I and II intervention trials: focus on multi-centre Phase I and II trials to test novel paradigms for intervention Advances in basic research

• Defining what patients need what therapies: more targeted and more tailored interventions• Advances in basic research • Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) • Research into triple negative breast cancer • Research on new therapies (such as vaccines and gene therapies) and new surgical and radiation treatments

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives
(II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer) (II) Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer) (II) Increase research efforts into the role of the tumour microenvironment and the immune system in the development and treatment of breast cancer (theme #4 Therapies and targets in breast cancer) (II) Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screendetected to metastatic breast cancer (theme #5 Disease markers in breast cancer) (II) Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer

2

3

Level of Funding for Category* and Known Funders (>$100k)

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• Research on hormonal therapy (such as tamoxifen)

Listing of Stakeholders prioritizing this Code

5. Treatment (cont.)

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives
(II) Develop and rigorously evaluate appropriate psychosocial interventions (theme #7 Psychosocial aspects of breast cancer) (II) Encourage cross-specialty collaborations to incorporate psychosocial issues and psychological theory (for example psychological theories in relation to behaviour change are relevant to those researching preventative lifestyles including diet and exercise) (theme #7 Psychosocial aspects of breast cancer) (II) Ensure research gives greater attention to all stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included (theme #7 Psychosocial aspects of breast cancer)

2

3

Level of Funding for Category* and Known Funders (>$100k)
14% CIHR CBCRA CBCF CCS/NCIC FRSQ

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• KT interventions : knowledge transfer: increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists • Survivorship and Quality of Life intervention research: better understanding of issues and design of interventions • Support across the course of the disease, including post-treatment complications (e.g., pain, lymphedema), stress management, mental health and reintegration issues, body image, selfesteem, for patients and their family/ caregivers • Studying the social influences on behaviour related to breast cancer • Financial issues/aid (e.g. child care; employment insurance) • Health care delivery: how is care currently being delivered? Are we doing the things we ought to do? Need for more coordination or communication between players and in hospitals; more clinical teams and less individual physicians (fewer opportunity for mistakes; opportunity for second opinion) • Research into plans and policies that will ensure there are enough trained health care professionals for treatment and support • Inequities: inequities and social determinants, equitable access to anticancer drugs across the country

Listing of Stakeholders prioritizing this Code
Researchers: SRAW, NCIC Summit, Vision 2020 BC Survivors Policy makers Funders (Translational research and Evaluation of Supportive Care described as Current Priorities with Health Services/New Models seen more as an Emerging Priority)

6. Cancer control, survivorship and outcomes *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

6.1 Patient care and survivorship issues 6.4 Cost analyses and health care delivery 6.5 Education and communication

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Synthesis of Top Breast Cancer Research Priorities by CSO Code
1 CSO Category and corresponding Cancer Control
Continuum categories
(2) (1)

Mapping The Future
4 5 6
International Linkages (5) (I): Top 10 Priorities (II): Recommendations from UK Gap Analysis (III): CBRP Initiatives

2

3

Level of Funding for Category* and Known Funders (>$100k)

Prioritized CSO Code

(3)

Examples of Identified Research Issues/Questions (4)
• What is the ranking in terms of cost-effectiveness of new technologies relative to the most broadly used current technologies? • What population-based interventions can be introduced to increase percentage of women screened? • Research on wait times and their physical and psychological impact on the patients • What are the benefits and risk associated with genotyping? • What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced? • What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdictions? What would be the best strategy for developing assessment and evaluation protocols? • Within an integrated populationbased approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required? • Effective messaging about personal risk reduction • Education of the public about the disease, prevention and its risk factors, particularly for young and pre/menopausal women • Knowledge level of health care professional (e.g. teach basic facts detection methods, risks for young women, alternative therapies)

Listing of Stakeholders prioritizing this Code

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Mapping The Future
Synthesis of Top Breast Cancer Research Priorities by CSO Code
(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp) (2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. (3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details. The codes listed in this column are the ones considered to be the most important by all stakeholders, relative to the other codes in that category. * According to CCRA 2005 data (total $37.5M, which does not include Weekend to End Breast Cancer funding recipients and some provincial and federal funding agencies (e.g., SSHRC, Genome Canada) (4) This column lists some examples of the type of research question/issues that stakeholders consider most important to address in that category. (5) This column cross references the themes and priorities identified in three international studies: (i) International web-based consultation on priorities for translational breast cancer research (“The Top Ten Priorities”), (ii) Evaluation of the current knowledge limitations in breast cancer research: a gap analysis (“The UK Gap analysis”) and (iii) Identifying gaps in breast cancer research: Addressing disparities and the roles of physical and social environment (“The CBCRP Initiatives”), against the CSO codes selected by the stakeholders consulted for the present report.

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Mapping The Future
Introduction
Why does Breast Cancer Research Continue to be Important?
Female breast cancer rates in Canada are amongst the highest in the world1. In every adult age group, breast cancer is the most common female cancer, accounting for over 30% of all new diagnoses in women aged 20-49 and 50-69, and 20% among older women. It is the leading cancer cause of death in young women, and ranks second and third, respectively in older ages. Breast Cancer in Females, Canada Summary statistics 2007 (estimates) Number of new cases Incidence rates % of all cancers in females Incidence rank in females Number of deaths Mortality rate * Excluding non-melanoma skin cancer One in 9 women is expected to develop breast cancer during her lifetime. One in 28 will die of it. On average, 431 Canadian women will be diagnosed with breast cancer and 102 Canadian women will die of breast cancer every week. In 2008, an estimated 22,400 women and 170 men will be diagnosed with breast cancer. Out of these estimated figures, 5,300 women and 50 men will die of it. It is a daunting picture. While incidence and mortality rates have continued declining in all ages combined and in every age group, likely as the result of the uptake of screening mammography and the use of more effective adjuvant therapies following surgery, there are many questions that remain unresolved. 22,300 104 per 100,000 29% 1* 5,300 23 per 100,000

Why a National Summit?

As a leader in breast cancer research in Canada, the Canadian Breast Cancer Research Alliance (CBCRA) represents researchers, funders, breast cancer survivors and other interested parties from the public, private and non-profit sectors committed to finding ways to prevent breast cancer, improve survival, and enhance the lives of those affected by the disease. Since its inception in 1993, CBCRA has awarded $162 million to 488 breast cancer research initiatives covering a broad range of topic areas. Breast cancer research in Canada is at an important crossroads. While leading edge work is underway across the country, there has never been a more important time to meet as a community to determine a more strategic and efficient pathway to success. The National Summit on Breast Cancer Research has the potential to achieve this goal. As a forum of leaders, it will be a source for valuable input and thoughtprovoking discussion surrounding development of a much needed national breast cancer research framework. The framework, once fully implemented, will facilitate the sharing of meaningful information and result in more effective anticipation of and response to scientific opportunities. The Summit is also a critical component of CBCRA’s strategic review and planning process, opening the door to a broad and inclusive consultation process that will shape its future role and contribution to Canada’s breast cancer research community as “the voice and action of breast cancer” in this country.

What is the Summit?

The Summit presents an unprecedented opportunity for Canada’s key breast cancer research stakeholders to meet to discuss issues, establish priorities, identify synergies, and set a clear, common framework for future breast cancer research initiatives. It will mark a turning point for breast cancer research in Canada, bringing funding leaders and other breast cancer community stakeholders together to create a shared vision for a national breast cancer research framework and inspire a more open and collaborative way of working together. It will also provide a window onto sources of funding for research scientists and provide a seat at the table for all stakeholders, in the development of a national framework. Invited Summit participants include representatives from cancer care agencies and foundations, NGOs with a mandate in cancer research,

All statistics taken from Canadian Cancer Statistics, 2007: produced by CCS, NCIC, Statistics Canada, provincial/territorial cancer registries, and the Public Health Agency of Canada.
1

National Breast Cancer Research Summit | Key Findings | Introduction Results

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provincial and federal funding organizations, health research agencies and research institutes, researchers, policy-makers, survivors and breast cancer community leaders at both the national and regional levels.

What is the Purpose of the Summit?

The Summit is geared toward the development of a national breast cancer research framework that will anticipate and be responsive to new scientific opportunities and challenges and improve co-ordination of breast cancer research efforts in Canada, maximizing synergies and reducing duplication. Three expected outcomes of the Summit have been identified: 1. There is a shared commitment to the benefits of developing a national breast cancer research framework and agreement to work together 2. A frank and open discussion has taken place of what it will take to achieve these desired benefits; and 3. A compelling action agenda for making progress has been agreed, including such elements as: plans for moving forward, agreed areas of focus, partnership opportunities, and collaboration principles.

What Will Happen After the Summit?

The Summit’s success will be assessed by the ability of the group to share information and be open to new models of collaboration. It is hoped that the participants will also commit to moving the proposed national framework into action. Moving forward, CBCRA’s objective will be to support the decisions made at the Summit and to encourage and facilitate the identified priorities for breast cancer research in Canada, maximizing synergies and reducing duplication. To that end, the outcomes of the Summit, together with an extensive governance review that is underway, will inform the CBCRA Board of Directors in the development of the five-year strategic plan (CBCRA-Vision 2015). The Summit discussions will also help to clarify the role and voice of the Alliance as Canada’s co-ordinator of national breast cancer research efforts. Summit proceedings will be posted on the CBCRA website.

What are the Benefits of a National Research Framework?

Most stakeholders consulted expressed support for the creation of a national breast cancer research framework. Benefits identified include the value of creating a unique Canadian focus, on tackling projects that are bigger than any one funder, better overall deployment of resources, and less duplication. Further, the view was expressed by funders that donors are coming to expect collaborative efforts – they want to know that “there is effective coordination or communication between the different kinds of research going on in this country.” There were some concerns expressed about the initiative. Reassurances were sought that the role of the individual researcher will not be overlooked in a rush to develop large projects and large teams or that the initiative would turn into merely a coordination exercise – for it to have value, stakeholders emphasized it must be “greater than the sum of all of the parts”.

What Might be Included in a National Breast Cancer Research Framework?

Stakeholders were asked what would need to be included in the national framework for it to have credibility. In establishing some overarching principles, they indicated that the Framework needed to be: • Comprehensive and balanced • Adaptable to emerging priorities; retain its currency • Demonstrating a unique Canadian niche, positioned strategically with research being conducted in other countries • National and regional in scope • Identifying minimal and optimum: not telling others what to do • Demonstrating the case for more excellent research and more funding of research • Focused on goals and accountability; measurable outcomes • Demonstrating how duplications and overlaps in administration will be minimized • Identifying the enabling structures required. Specific areas of focus for research were also suggested2, including: • Screening/early detection • Knowledge translation • Health services • Cancer genetics • Cancer biology.
2 Note: This list is not meant to be comprehensive, merely exemplary of the type of content that stakeholders believe should be included in a national framework.

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Mapping The Future
Diverse opinions were shared as to the optimal process for creating such a framework with some favouring an inclusive consultative approach and others a ‘dream team’ expert based model. In fact, in developing the proposition, every attempt has been made to marry both processes to ensure engagement as well as strong content.

Are Other Jurisdictions Concerned about Breast Cancer?

In the last couple of years, forward looking individuals and organizations in Europe and the US have initiated strategic projects designed to build momentum in breast cancer research. Captured in these pre-reading materials are the key messages from four such initiatives: 1. The largest recent international initiative designed to identify research priorities with input from researchers across the globe. What have become known as the “Top 10” or the St Gallen Research Priorities were issued in March, 2007 2. A rigorous national initiative undertaken in the United Kingdom over the last couple of years identified research gaps and published (March 2008) recommendations in seven themes including: genetics, initiation, progression, therapies and targets, disease markers, prevention, and psychosocial aspects 3. The California Breast Cancer Research Program (CBCRP) has identified research priorities related to the role of the environment and disparities, as well as the intersections of multiple factors that impact breast cancer. They issued a funding announcement for nine new initiatives in April, 2008 4. A Collaborative Summit on Breast Cancer Research, hosted in Virginia by key funding agencies like the Avon Foundation, The Breast Cancer Research Foundation, Susan G Komen for the Cure and attended by some 100 invited participants: (funders, advocates, government agencies and scientists from academic institutions and the pharmaceutical industry) led to the identification of a number of key action items, including the establishment of a National Breast Cancer Planning Committee and the commitment to being more transparent in sharing information and reporting to the public. See http://www.fnih.org/news/breast_cancer_summit.shtml for details.

Within Canada, similar momentum is being experienced. CBCRA held a Strategic Research Agenda Workshop in December 2006. Proceedings are available on the CBCRA website (www.breast.cancer.ca) and the outcomes of the workshop are discussed later in this section under the heading Summary of Canadian Breast Cancer Researcher Priorities. The results of the Summit hosted by the National Cancer Institute of Canada (NCIC) in May 2007 were also used to inform the researcher results write-up. A multi-stakeholder workshop was convened in Vancouver in the spring of 2007 by the BC/Yukon Region of the Canadian Breast Cancer Foundation (CBCF). “Vision 2020 Imagine a future without breast cancer” included in its proceedings five priorities for action related to prevention, the health care workforce, early detection, treatment and research. Proceedings are available at www.cbcf.org/en-US/BC%20Yukon/Our%20Chapter%20in%20Action. aspx.

What Will it Take to be Successful?

Canada has much off which to build. A number of national breast cancer research assets were mentioned during the data gathering process. Canada has great strength in its individual researchers. The universal health care system which includes the use of fairly uniform treatment protocols, together with the multiculturalism of Canada are seen as distinct advantages. Of international renown is the NCIC Clinical Trials Group. Canada is seen as exceptionally strong in the biomedical area, for example, cancer genetics such as the Human Genome project and cancer biology. The Letrosol trial is another example of Canadian excellence where research findings changed clinical practice almost immediately. Some areas where Canada has the potential to become world renowned include: survivorship research, prevention research, population/cohort studies, the use of telemedicine and telehealth, research into environmental issues that increase risk and gene interaction. Moving the Plan through to successful execution will require commitment from the funding parties, individuals and organizations with the passion, time and energy to move a national agenda forward. Flexibility and adaptability, with strong accountability will be needed. Collaboration among the funders will be a further requirement given that they will need to work together in new and different ways. For additional information, see http://www.toptenresearch.org/index.html - The full text article url is at: http://breast-cancer-research.com/content/9/6/R81
3

The report on this initiative is entitled “Evaluation of the current knowledge limitations in breast cancer research: a gap analysis”, A. Thompson et al. Breast Cancer Research, 2008, 10:R26 identified research gaps. The full text article is at http://breast-cancer-research.com/content/10/2/R26
4 5

For additional information, see http://www.cabreastcancer.org/media/pr/041008.php

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The data gathered indicates that funders, on the whole, are interested in collaborating to fund excellent science. Key informants and survey respondents indicate experience with collaboration (most typical areas are prevention and knowledge translation) – and based on that track record, identify that while collaboration can have enormous benefits, it is not without its challenges. In particular, funders identify the following critical success factors: • Develop a shared sense of purpose the earlier, the better –a sense of purpose that can be described as having a large win for the country; included in the sense of purpose should be what the group effort will accomplish that couldn’t be done individually. Establish ‘ambitious’ programs and don’t ‘smatter’ funds for the sake of pleasing everyone • Fewer partners make the process easier • Find partners with complementary or compatible operating styles • Apply the funding in agreed value-added ways • Establish clear accountability, role definition and shared ownership of the agenda • Identify a lead partner who can help orchestrate the activities of the collaboration and bring cohesion to its activities • Remember to evaluate, actively manage the risk and to celebrate results.

If Collaboration Among Funders is Key, Is there Any Appetite among Funders to Play?

What Pre-Reading Materials are Provided?

In order to provide a common set of data to all participants, CBCRA engaged in a comprehensive data gathering exercise to bring to the Summit, the views of researchers, policy influencers, survivors, and funders. Based on agreement as to the core information being sought, tailored data gathering approaches were developed and implemented over the past six months. The result is a rich and diverse data set, some of which is presented in this binder (the summaries) and others of which is available on CBCRA’s website (the full reports). Following this introductory chapter, a comprehensive summary of research results is provided. Research priorities have been identified by each of: • Policy influencers • Funding organizations • Survivors • Researchers, and • International initiatives. The approach used is to present some background on the data gathering process, including some detail on the methodology, and an overview of the results. A summary table designed to capture the identified research priorities and organized by Common Scientific Outline (CSO) category, is also provided in each section. One cross cutting summary is included, focusing on the gaps and changes required to the current research system if this national research framework is to be implemented successfully. Preceding this chapter is an Executive Summary and Summary Table. Both are critical documents. The data gathering findings are described in the Summary in the simplest way possible. The summary table was developed based on an extensive review and analysis of all the findings. It presents – by CSO code, within each of the CSO categories, the priorities identified across all stakeholder groups. Included in the table are also examples of possible research questions, the related international priorities, and a listing of the current funding agencies with a track record of investing in that specific CSO category. Rounding out the contents of the binder is a list of definitions and some background material on CBCRA. Note that there is a tab for a Participants’ Worksheets. These will be your roadmap to navigating the Summit and will be made available on site at the Summit.

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Mapping The Future
Highlights from Policy Influencers’ Perspectives on Breast Cancer Research
These highlights were prepared from the full report by William Maga Consultants Ltd. (May 2008) Introduction
The Board of Directors of the Canadian Breast Cancer Research Alliance decided last June to take the recommendation of an external evaluation of the organization to explore the possibility of expanding the mandate of the CBCRA to go beyond funding of breast cancer research to facilitating the development of a national breast cancer research framework. This prospect will be explored at a summit in May 2008. In preparation for this summit, a series of background papers was produced which present various perspectives. This paper represents the views of those who set or influence policy related to breast cancer. This perspective was obtained through interviews with 15 individuals who either make or influence policy related to various aspects of breast cancer treatment and management at the federal, provincial, territorial and organizational levels. The individuals were identified by canvassing members of the breast cancer community and asking for recommendations of people who together would comprise an appropriate functional and geographical profile. Limitations to this data include the challenge of identifying the appropriate individuals in the different levels of government given that breast cancer is no single policy maker or influencer’s entire portfolio. Further, once the appropriate people were identified, getting sufficient time on the schedule of busy policy leaders was frequently challenging.

Current Priorities of Policy-makers
When asked about current priority activities in their jurisdiction, the participants mentioned a wide range of activities – from screening to palliation. Taken in total, there was a clear emphasis on screening and clinical trials as the current priorities. Participants’ knowledge of priorities within their own jurisdiction was usually restricted to one or two activities and they did not seem to have a full appreciation of what was happening in other jurisdictions, with those involved in screening among the few exceptions. Participants were then asked to make any observations related to breast cancer research in general that they might wish and to identify what they felt were important issues related to the areas of screening, treatment/cure and prevention/palliation. Under each category, research questions were identified. As general observations, participants highlighted one overall priority and one concern. It seems that the search for priorities is an exercise that is being repeated at other levels across Canada, such as the one currently underway in British Columbia. The question arises of how to link the results of these exercises in a way which will maximize their utility to all levels of government and interested organizations. Secondly, there is a broad consensus regarding the need to address the future, if it is not already current, shortage of health human resources (HHR). Factors such as new technologies and expanded screening coverage are increasing demand for treatment and services while factors at work on the supply side such as retirement, burn-out and outdated sourcing processes are hampering attempts to meet those demands.

Research Questions:
1. 2. What fundamental changes can be made to the current approaches to the detection, treatment and management of breast cancer, and the funding thereof, in order to accelerate progress in its management and cure? What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced?

Early Detection
Regarding screening, it was felt that the current collaborative model involving different levels of government and organizations has produced a number of benefits. The model has increased sharing of information and the development of standards for measures and targets. But despite the fact that early detection remains a major policy priority across Canada, it was also made clear that more needs to be done. The World Health Organization screening target of 70% has not been met consistently in any jurisdiction and the role of the family physician in advocating early detection has to be strengthened. There is also the need for the programs to be more flexible and to overcome the “one size fits all” implementation approach. The “low hanging fruit” has been picked and the programs must be able to accommodate the cultural, ethnic and geographical variation of Canada and find new ways of convincing and enabling women to participate in early detection

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programs. In addition, more context is needed from the broader women’s health and gender perspective. Finally, many interviewees noted the commonality of factors associated with chronic disease and raised the need to take integrated approaches where appropriate in order to maximize the benefit derived from the limited resources available.

Research Questions:
1. What are the best communications strategies to educate family physicians about the realities of breast cancer and to encourage them to pass those lessons on to their patients? 2. What are the most influential factors in determining whether a woman is screened? How do these change in various populations and geographies (like the North)? 3. What are the different service models that would facilitate the delivery of screening services to women close to home? 4. How can we ensure that the most cost-effectiveness technologies, whether new or broadly established, are used? 5. What are the benefits and risk associated with genotyping?

Treatment /Cure
With respect to treatment and cure, participants felt that the research and methodologies surrounding clinical trials and clinical practice guidelines are well established, especially given the exemplary work being done by the Clinical Trials Group of the National Cancer Institute of Canada. Concerns arose, however, about the length of time required to go from research to practice and questions raised about how the process could be expedited. This view was countered by the observation that, although analytical rigour is indeed timeconsuming, it is essential and cannot be compromised. It was felt that the translation of research was also operating well through established processes, although the issue of maximizing the uptake of guidelines was raised. Wait times was also of key concern. Despite the increased profile provided by federal initiatives in the area and the resulting increase in attention given wait times by the research communities, there remain some basic questions about wait times. For example, at what point in time does waiting present a risk? What are the emotional impacts on patients and families of waiting? It was felt that more collaboration is needed among the provinces to maximize the exchange of information as was done in the case of screening.

Research Questions:
1. How can clinical trials and other studies and their translation be expedited in order to get new treatments and approaches into practice as quickly as possible, while maintaining the rigour of the process? 2. How can the uptake of guidelines be maximized? 3. After what period of time and under what circumstances does waiting for treatment for various breast cancers become dangerous? 4. What are the physical and psychological impacts of waiting? 5. Are wait times a disease specific issue, requiring an appreciation of the characteristics of the disease or treatment; or is it a system-wide issue that can be resolved by organizational change or additional funding? 6. What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdic tions? What would be the best strategy for developing assessment and evaluation protocols? 7. How must the current system change in order to incorporate molecular science into medicine? 8. What role should non-medical interventions such as homeopathic treatments play not only in treatment but also in prevention and palliation?

Prevention/Palliation

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Mapping The Future
There is an undeniable consensus that, when looking along the continuum, there is an imbalance between the level of research being undertaken in areas such as clinical trials and screening and areas like prevention, psycho-social programming and palliation. A number of reasons were cited for this – different methodologies, variation in time horizons of researchers and policy analysts, the much longer period of time required to investigate prevention issues as compared to other types of research. In addition, the need was highlighted to correct women’s misperceptions regarding environmental and lifestyle determinants of breast cancer as well as the basic facts related to early detection and screening. Finally, the need for expanded research in the areas of prevention, psycho-social programming and palliation was continually emphasized.

Research Questions:
1. What are the factors which impede research into prevention, psycho-social and palliation issues? 2. What are the key causes of breast cancer generally across the population and within certain cultural groups? What are the best communications strategies for providing those populations with that information? 3. What population-based measures can be taken to reduce breast cancer incidence and increase screening? 4. Within an integrated population-based approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required? 5. What are the models of an integrated approach that covers the full spectrum of care?

Policy Requirements for a Research Strategy
The majority of policy influencers agree that there is a clear need for a coordinating body, as part of a national research strategy, to target research to achieve better results. From a policy perspective, there is a need to ensure that researchers are more cognizant of policy requirements both in terms of types of evidence needed as well as the time horizons which exist outside the research community. Some interviewees felt that CBCRA and the Canadian Cancer Research Alliance have, to a certain extent, been able to fulfill that role - but more needs to be done. For instance, while CBCRA is considered by some participants to have done a good job in encouraging interaction between players, it was observed that “stovepipes” still remain and that researchers can be expected to “go by their heart and training”. Often academic researchers are out of the picture until a discovery is made which propels a disease or possible cure to the fore. Suggestions were made regarding the need for “regularization and formalization” of interactions among policy influencers, researchers and stakeholders. A national strategy must be inclusive of participants from the whole breast cancer community – researchers, policy influencers, survivors and patients. In fact, inclusion should go beyond the immediate breast cancer community to include non-single issue women’s groups because all women are potential patients. In terms of the essential players, it was felt that there is a need for national level coordination which possesses the “big picture perspective” - federal and provincial bodies like the Canadian Institutes of Health Research, the Public Health Agency of Canada and provincial ministries – although not without their demerits - were mentioned in this regard. It was noted that it is an advantage to have diversification and competition in the research funding field. It was also recognized that the Canadian Partnership Against Cancer (CPAC) and the Canadian Association of Provincial Cancer Agencies have significant roles to play. It was noted that a national strategy would best be lead by an organization which can achieve buy-in from all players; an organization which is essentially non-aligned, national and based on consensus building. A science advisory committee would also be necessary, composed of representatives from all segments of the community – screening, science, clinical, prevention, psycho-social and survivor. It was continually noted that a direct benefit of the development of a breast cancer research strategy would be a process which brings together all the actors – researchers, policy influencers, lawyers and ethicists. This process would promote a broad understanding of the goals and obstacles related to each group and in turn foster an integrated approach to disease management research - from prevention to screening to diagnosis to treatment to palliative care. Benefits would also arise indirectly from the establishment of a critical mass of funding and HHR that can be directed toward established priorities. The refinement of goals would help identify gaps in the evidence and duplication would be avoided.

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Conclusions:
A coordinating body is needed which has the “big picture perspective” and is national, non-aligned and inclusive to target research into more cost-effective areas and to ensure that information is shared among jurisdictions. There is a need for a comprehensive assessment process for all cancer treatments, including those related to breast cancer. Research will continue to be a time-consuming process and the variation in time horizons among players will continue to cause frustration. Research is needed to identify ways of minimizing that delay and frustration. There is a significant gap in research related to prevention, psycho-social and palliation issues related to breast cancer as well as the provision of health services – particularly critical is the rural/urban and cultural variation issues. Much more effort must be put into breast cancer programs for First Nations and Inuit. There is also the need for strategies to increase the awareness of breast cancers facts and encourage access to screening; evaluations of existing strategies related to access and wait times; a translation component to provide a better understanding of the predictive factors for breast cancer and large scale studies related to prevention.

Appendix
List Of Policy Influencers Interviewed
Dr. Pierre Band Marcia Campbell Sheree Davis Susan Fitzpatrick Senior Medical Epidemiologist Program Coordinator Breast Cancer Screening, Yukon Region Director, Health Systems Strategy Division Executive Director Negotiations and Accountability Management Health Services Accountability and Performance Division President, Business Council of British Columbia A/Director, Women’s Health and Gender Analysis Division Medical Health Officer Co-Chief Executive Officer Directeur A/Manager, Screening and Early Detection Chronic Disease Management Division Program Director Vice President, Cancer Care Nursing Consultant, Maternal and Child Health, Department of Health and Social Services Director, Chronic Disease Management Division Special Advisor, Strategic Policy, Planning and Analysis Division Healthy Environments and Consumer Safety Branch, Health Canada Government of the North West Territory Ontario Ministry of Health and Long-term Care Ontario Ministry of Health and Long-term Care

Virginia Greene Jean Kammermayer Kami Kandola Dr. Eshwar Kumar Dr. Antoine Loutfi Jay Onysko Melanie Rathgeber Susan O’Reilly Faye Stark

Former Chair, Canadian Breast Cancer Foundation Board Health Canada Government of the Northwest Territories New Brunswick Cancer Network Direction de la lutte contre le cancer Ministère de la Santé et des Services sociaux Public Health Agency of Canada Health Quality Council, Saskatchewan British Columbia Cancer Agency Government of the Northwest Territories

Lianne Vardy Dawn Walker

Public Health Agency of Canada First Nations and Inuit Health Branch, Health Canada

The full report on Policy Influencers’ Perspectives on Breast Cancer Research is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).

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Policy Influencers’ Perspectives on Breast Cancer Research

Mapping The Future

CSO Category¹ and corresponding Cancer Control Continuum categories²
1. Biology *Prevention *Diagnosis *Treatment

CSO Code³
1.1 Normal Functioning 1.2 Cancer Initiation: Alterations in Chromosomes 1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes 1.4 Cancer progression and metastasis 1.5 Resources and Infrastructure

Policy Influencers’ Perspectives on Breast Cancer Research

CSO Category¹ and corresponding Cancer Control Continuum categories²
7. Scientific model systems *Prevention *Diagnosis *Treatment

CSO Code³
7.1 Development and characterization of model system 7.2 Applications of model systems 7.3 Resources and infrastructure related to scientific model systems

Policy Influencers’ Perspectives on Breast Cancer Research

CSO Category¹ and corresponding Cancer Control Continuum categories²
2. Etiology *Prevention *Diagnosis

CSO Code³
2.1 Exogenous Factors in the Origin and Cause of Cancer

Policy Influencers’ Perspectives on Breast Cancer Research
2.1/2.2 What are the key causes of breast cancer generally across the population and within certain cultural and sub-population groups (for example First Nations and Inuit)? 2.1/2.2 What are the key causes of breast cancer generally across the population and within certain cultural and sub-population groups (for

2.2 Endogenous Factors in the Origin and Cause of Cancer

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CSO Category¹ and corresponding Cancer Control Continuum categories²

CSO Code³
2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors 2.4 Resources and Infrastructure related to etiology

Policy Influencers’ Perspectives on Breast Cancer Research

2. Etiology (cont)

CSO Category¹ and corresponding Cancer Control Continuum categories²
3. Prevention *Prevention *Treatment

CSO Code³
3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk 3.2 Nutritional science in cancer prevention 3.3 Chemoprevention 3.4 Vaccines 3.5 Complementary and Alternative Prevention Approaches 3.6 Resources and Infrastructure related to prevention

Policy Influencers’ Perspectives on Breast Cancer Research
3.1 What population-based interventions can be introduced to reduce breast cancer incidence? How could these be tailored to address the issues of sub-populations like the First Nations and Inuit? 3.5 What role should non-medical interventions such as homeopathic treatments play in prevention?

CSO Category¹ and corresponding Cancer Control Continuum categories²
4. Early detection, diagnosis and prognosis *Screening *Treatment *Diagnosis

CSO Code³
4.1 Technology development and/or marker discovery 4.2 Technology and/or marker evaluation with respect to fundamental parameters of method

Policy Influencers’ Perspectives on Breast Cancer Research

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Mapping The Future

CSO Category¹ and corresponding Cancer Control Continuum categories²
4. Early detection, diagnosis and prognosis (cont) *Screening *Treatment *Diagnosis

CSO Code³
4.3 Technology and/or marker testing in a clinical setting 4.4 Resources and infrastructure related to detection, diagnosis or prognosis

Policy Influencers’ Perspectives on Breast Cancer Research

CSO Category¹ and corresponding Cancer Control Continuum categories²
5. Treatment *Treatment

CSO Code³
5.1 Localized therapies: discovery and development 5.2 Localized therapies: clinical applications 5.3 Systemic therapies: discovery and development 5.4 Systemic therapies: clinical applications 5.5 Combinations of localized and systemic therapies 5.6 Complementary and alternative treatment approaches 5.7 Resources and infrastructure related to treatment

Policy Influencers’ Perspectives on Breast Cancer Research

5.6 What role should non-medical interventions such as homeopathic treatments play in treatment?

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CSO Category¹ and corresponding Cancer Control Continuum categories²
6. Cancer control, survivorship and outcomes *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

CSO Code³
6.1 Patient care and survivorship issues

Survivors’ Perspectives on Breast Cancer Research
6.1 What are the physical and phycological impacts of waiting? 6.1 How should patient care and survivorship programs be tailored for sub-populations such as the First Nations and Inuit?

6.2 Surveillance 6.3 Behavior 6.4 Cost analyses and health care delivery

6.4 What are the benefits and risk associated with genotyping? 6.4 How must the current system change in order to incorporate molecular science into medicine? 6.4 What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced? 6.4 What are the models for an integrated approach that covers the full spectrum of care? 6.4 What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdictions? What would be the best strategy for developing assessment and evaluation protocols? 6.4 How can clinical trials and other studies and their translation be expedited in order to get new treatments and approaches into practice as quickly as possible, while maintaining the rigour of the process? 6.4 What is the ranking in terms of cost-effectiveness of new technologies relative to the most broadly used current technologies? 6.4 What is the appropriate approach to introducing oncology drugs across Canada to ensure equitable access?

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Mapping The Future
CSO Category¹ and corresponding Cancer Control Continuum categories²

CSO Code³

Survivors’ Perspectives on Breast Cancer Research
6.4 Within an integrated populationbased approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required? 6.4 What are the most influential factors in determining whether a woman is screened? How do these change in various populations? 6.4 How can screening services be taken to women rather than having women travel to the services? 6.4 What population-based interventions can be introduced to increase percentage of women screened? 6.4 After what period of time and under what circumstances does waiting for treatment for various breast cancers become dangerous? 6.4 Are wait times a disease specific issue, requiring an appreciation of the characteristics of the disease or treatment; or is it a system-wide issue that can be resolved by organizational change or additional funding?

6. Cancer control, survivorship and outcomes (cont) *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

6.5 Education and communication 6.6 End-of-life care 6.7 Ethics and confidentiality in cancer research 6.8 Complementary and alternative approaches for supportive care of patients and survivors 6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research

6.5 What are the best communications strategies to educate family physicians about the realities of breast cancer and to encourage them to pass those lessons on to their patients? 6.5 How can the uptake of guidelines be maximized? 6.5 What are the best communications strategies for providing sub- populations with relevant information? 6.7 What are the ethical issues associated with genotyping? 6.8 What role should non-medical interventions such as homeopathic treatments play in palliation?

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¹ The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp). ² Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details. ³ The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.

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Mapping The Future
Preface to Funders Summary and Table
The purpose of this preface is to provide a snapshot of current breast cancer research funding in Canada – its size and shape - to complement the summary write-up which is focused on the views and opinions of these same funding organizations. There are five sections to this preface, ranging from a high level comparative snapshot, trends in cancer research funding, a breakdown of the funding provided to breast cancer research by CSO category and by type of grant, an identification of the sources of funding not covered by CCRA, and finally a brief synopsis as to the costs of different types of research funding.

1. Snapshot of Breast Cancer Research Funding
Data has been provided by the Canadian Cancer Research Alliance (CCRA). More in-depth analysis is available for the funding year 2005 with more high level comparators only being available for 2006. While there was a significant increase in the number of funding organizations contributing data to the 2006 survey, data from some key organizations is missing (see comments at end of document). Based on this data, breast cancer remains the most highly funded of all cancer sites, but represents a smaller percentage of the total pot (12% as opposed to 15%). Table 1: Comparison of Breast Cancer Research Funding 2005 and 2006 Year Number of CCRA members Overall funding to breast cancer research Direct funding to research grants Funding of Canada Research Chair program Funding of trainees Funding of CFI grants Funding of Equipment/Infrastructure Salary support 2005 (1) 19 $38.5 M ( 15% of $253.6 M) $30.3 M N/A $2.02 M Not applicable $2.1 M $1.2 M 2006 (2) 20 $49.5 M (12% of $412.8 M) $38.7 M (18% of $214.2 M) $1.9 M (11% of 17 M) $3 M (15% of $20 M) $3.2 M (4% of $80.4 M) Not available Not available

(1) In 2005, data for the survey were contributed by CCRA members and affiliated organizations only. (2) In 2006, 14 additional organizations (including Canada Research Chairs, Canada Foundation for Innovation, Stem Cells Network and Networks of Centres of Excellence) contributed data to the survey, in addition to the CCRA members and affiliated organizations. Genome Canada is now a CCRA member.

2. Cancer Research Funding: A Trending Comparison of Different Cancer sites
In terms of trends over the last four years, Figure 1 suggests that breast cancer research funding has increased at a faster rate compared to other sites. Also showing growth is research funding for brain and prostate cancer – but particularly with prostate, the data may be misleading given the inclusion of additional data sources in 2006.

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Figure 1: Trend in Site Specific Research Funding – 2003-2006
$ 5 0 ,0 0 0 ,0 0 0

$ 4 5 ,0 0 0 ,0 0 0

$ 4 0 ,0 0 0 ,0 0 0

$ 3 5 ,0 0 0 ,0 0 0

$ 3 0 ,0 0 0 ,0 0 0

$ 2 5 ,0 0 0 ,0 0 0

$ 2 0 ,0 0 0 ,0 0 0

$ 1 5 ,0 0 0 ,0 0 0

$ 1 0 ,0 0 0 ,0 0 0

$ 5 ,0 0 0 ,0 0 0

$2003 2004 2005 2006

B r a in

B re a s t

C o lo r e c t a l

L e u k e m ia

Lung

P ro s t a t e

O th e r

* This chart was obtained from Kim Badovinac, Manager, Canadian Cancer Research Survey, Canadian Partnership Against Cancer.

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Mapping The Future
3. The Nature of the Research Investment
Table 2 categorizes the research investment by CCRA members and affiliated organizations in each of the CSO categories. Only CBCRA (Total: $8,824,242) and the Alberta Cancer Board (Total: $275,874) fund across the full spectrum of breast cancer research. Table 2: Breakdown by CSO Category – 2005 Data Early detection, diagnosis and prognosis Cancer control, survivorship and outcomes Scientific model systems

Biology ACB AHFMR BCCA CCMB FCSQ FRSQ MSFHR OICR SCA CBCF CBCRA CCS-NCIC CIHR CTCRI NRC NCIC-TFF CRS

Etiology

Prevention

Treatment

Table 3 categorizes the investment by type of grant. The preponderance of operating grants becomes obvious when analyzed in this way. Table 3: Breakdown by Grants Types - 2005 Data Research related support Salary support Trainee research

Equipment/Infrastructure ACB AHFMR BCCA CCMB FCSQ FRSQ MSFHR OICR SCA CBCF CBCRA* CCS-NCIC CIHR CTCRI NCIC-TFF CRS

Operating Grants

* All research grants funded by CBCRA are classified as operating grants in the CCRA database, including CBCRA’s Strategic Initiatives grants. For more information, please consult the list of definitions and acronyms in the final section of your binder.

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4. Funds not Included in the CCRA Database
The largest groups of funding organizations remaining outside of the CCRA database are the provincial cancer foundations and hospital foundations1. While specifics are not available, there are some broad data points to inform the discussion: • Revenue within hospital foundations has been growing at a significant pace, especially in Alberta and Nova Scotia. Overall revenue had increased 86% in 2006 from numbers recorded in 2001 • Ontario represents 68% of all giving to hospital foundations, with 40% of all funds being raised in Toronto with the largest foundations being Princess Margaret Hospital Foundation and the Hospital for Sick Children Foundation • Hospital Foundations are experiencing significant increases in their cost of fundraising given the competitive marketplace for professional fundraisers the overall expansion of fundraising programs; the greater investment in marketing and communications, and new spending on donor relations in an effort to retain donors and promote a philanthropic culture • There is little information available as to how these funds are spent • The Weekend to End Breast Cancer appears to be growing its revenue in Canada. However, Winnipeg has decided not to hold an event in 2008. Data presented in Table 4 reflects gross amounts. No disclosure is made as to net versus gross receipts, or what the split is between funding of breast cancer care initiatives and breast cancer research.

Table 4: Funds raised in 2007 by Provincial Cancer Foundations and Hospital Foundations through Weekend to End Breast Cancer Walks City Vancouver Calgary + Edmonton Winnipeg Ottawa Toronto Montreal Total: 2007 Beneficiary BC Cancer Foundation Alberta Cancer Foundation Cancer Care Manitoba Foundation Ottawa Regional Cancer Foundation Princess Margaret Foundation Jewish General Hospital Foundation Amount $5.1 M $12 M $2.3 M $2.6 M $17.3 M $7.9 M $47.2 M

Source: Google – Weekend to End Breast Cancer provincial sites

5. Size of Research Grants
Some preliminary figures are presented below to provide guidance to Summit participants as to the cost associated with different funding vehicles. Input from leaders of research funding organizations suggests the following ballpark figures: Operating grants (e.g., CBCRA, NCIC, CIHR, CBCF) Generally between $300 K and $1.5 M depending on the length (2-5 years) of the grants and the area of research (epidemiology grants have higher ceilings, fundamental science grants have lower ceilings). Generally between $1 M and $ 1.5 M per year for up to 5 years. Amount varies widely. Generally clinical trials cost between $3 K and $4 K per patient. However, with new expensive drugs, the cost can be up to $20 K-$30 K per patient. The Ontario Institute for Cancer Research has budgeted $20 M over 5 years for their cohort study.

Team grants Clinical trials Cohort studies

1 Data from report: Trends in Hospital Fundraising and Expenditures (2001-2006) the Offord Group, Inc and Innovative Research Group, Inc. April 2008

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Mapping The Future
Breast Cancer Research Priorities: A Summary of a Survey of Organizations Funding Breast Cancer Research in Canada and Related Key Informant Interviews
Brian Rush & Nancy Dubois Virgo Planning and Evaluation Consultants May 2008 Introduction
In preparation for a National Summit on Breast Cancer Research, in Toronto on May 26 and 27, 2008, the Canadian Breast Cancer Research Alliance undertook a multi-pronged process to conduct research, and gather perspectives and opinions concerning key issues in breast cancer research today. This report presents the findings from a survey of organizations that fund breast cancer research in Canada as well as more in-depth interviews with representatives of a small number of these same organizations. The results represent the collective views of 13 targeted key informant interviews and twenty (approximately 35%) of a potential 58 breast cancer research funding organizations that completed an on-line survey. By design, the online survey and in-depth interviews were complementary to each other, thereby allowing for more meaningful input and to elicit a deeper understanding of issues and perspectives from agencies that fund breast cancer research. The broader themes consistent across the two data sources, and the subject of an integrated analysis were: (a) Research Priorities and Perspectives; (b) Funder Collaboration; (c) System Gaps and (d) a National Breast Cancer Research Strategy.

Research Priorities and Perspectives

Current Organizational Priorities: Based on the self-identified current top, second and third priorities of the funding organizations, no one broad category of research consistently emerged at the top of the list. Overall the highest priorities identified were risk factors and prevention, treatment, research capacity development and lab/basic research with health services/systems research receiving the lowest rating among the eight priorities identified. The fact that most of the broad research areas were identified as current priorities suggests that the identification of one overall research priority could be challenging within a national research framework. Perhaps more exploration within the sub themes of a category is warranted in further defining research priorities within a national research framework. Prioritizing Previously Identified Priorities: Survey participants were also asked to rate the relative importance of nineteen breast cancer research priorities that had been previously identified by CBCRA through a broad consultation with the research community in 20061. They were also asked to identify the areas they considered to be most important from this list. The topic areas that emerged were: biomarkers, the early detection of metastatic disease and knowledge translation processes. Lifestyle influences on breast cancer, breast cancer subtypes and screening tools for high risk women were all equally rated as the next areas of importance. Overall, biomarkers received the highest number of selections as the ‘most important’. Emerging Priorities: Options regarding “emerging” topic areas for breast cancer research also provide insight into potential priority areas for consideration in national planning activities. Although opinions were quite varied, the following areas yielded some common ground across participants: cancer genetics; environmental risk factors; metastasis-related research, translational research, and a more holistic, life course perspective as an organizing research framework. Some of these opinions on emerging research converge with the ratings of relative importance of various topics (e.g. metastasis and translational research). Going forward, it will be important to triangulate these findings, and other opinions summarized in this report from individual respondents, with other sources of information being brought to bear at the Summit.

1

See report in Summary of Canadian Breast Cancer Researcher Priorities

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International Competitiveness: Opinions varied considerably on the areas in which Canada is currently international competitive (e.g., cancer genetics, cancer biology) and where Canada had the potential to be a world leader (e.g., quality of life and survivorship; large scale clinical trials). Importantly, several participants called for any work on a national breast cancer research framework to be positioned in a global context, and to consider priorities and funding processes in relation to cancer research generally. Several strengths unique to the Canadian context were identified, for example, the geographic and multicultural diversity, and the universal health care system. When asked directly what would it take to realize the potential for renowned breast cancer research in Canada, the main themes were that of partnerships (both within and globally), time and money.

Funder Collaboration

Most respondents to the survey (80%), and approximately half of those interviewed, reported some history of collaborative work with other funders. There is, therefore, an established base of experience among funding organization who may wish to explore the potential for increased collaboration. Lessons learned from previous collaborative work would include the need to work from a clearly stated and common goal; engage a limited number of partners and those with similar operating values; and be very clear with respect to level of commitment, roles and responsibilities. There were also strong opinions expressed about the importance of a “shared sense of purpose”, similar operating values as well as the need to be define the “value-add” in working more strategically together. Although the enthusiasm for collaboration was reasonably high (caveats and cautions aside), the current level of collaboration on the top organizational priorities was markedly low. The most frequently cited areas for collaboration included translational research and prevention. The data gathered suggests underlying factors such as the ability to find the right partner with similar priorities or that collaboration was not a preferred way of doing business may explain the relatively low level of current collaboration on those topics of highest priority in each organization. A more formalized national network may assist in linking organizations together with a mutual interest in addressing an identified research priority area.

A National Breast Cancer Research Strategy

There was strong support for the development of a national breast cancer research framework, although there were several caveats and recommendations provided for further consideration. This clearly suggests there is a readiness for the discussions that the National Summit will stimulate. It will be important, however, to recognize that the support for a national strategy was not universal among key informants. One person, for example, added the cautionary note that the need for better coordination does not automatically translate into the need for a national strategy.

System Gaps

The major gaps identified in the current breast cancer research system in Canada included: the need for funding to new multidisciplinary teams (clinicians/basic researchers), more team grants for long term sustainable programs and renewable grants to enable support of long term studies. Other gaps and needs that came to the fore were the critical shortage of physician/clinician scientists, the need for more strategic and integrated partnerships, and the need for leadership generally in order to fully realize Canadian potential.

Conclusion

This project has successfully garnered feedback on breast cancer research priorities, research collaboration, system gaps and other issues of relevance for a potential national research framework, from the perspective of research funding organizations in Canada. It is instructive to conclude with some observations from this project that may help identify areas of strengths going forward, and possible challenges to be addressed in the development of a national breast cancer research framework. Strengths: • There is strong support for developing a national breast cancer research strategy in Canada, with careful consideration to be given to its essential purpose, value-add and many other operational issues that would need to be worked out. • There is previous history of collaboration by many key players and open acknowledgement of lessons learned on critical success factors and key processes. • Although more resources can be put to good use for breast cancer research, Canada does have a solid funding base upon which to build a more strategically development research agenda. • Canada also clearly has a cadre of excellent and internationally renowned researchers working in the area of breast cancer. Existing national and international relationships will be key to fitting an emergent Canadian research agenda into an international context.

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Mapping The Future
• There is some agreement that Canada is particularly strong in the biomedical area, for example, cancer genetics, such as the Human Genome project, and cancer biology. • Canada also offers several other unique strengths for international leadership, for example, advantages derived from our universal health care system and its geographic and multicultural diversity • The various data gathering activities implemented in the support of the Summit, including the many detailed findings in this report from the funder perspective, represent groundwork already completed and clearly provide an important foundation for future strategic planning.

Potential Challenges: • There is a need for additional physician/clinician scientists in Canada that are doing breast cancer research. This would, for example, increase the quantity of translational research, moving the research findings to the patient level. • Other system gaps that have been identified, such as the need for larger team grants with integrated teams and longer-term funding, would require not only a significant amount of collaboration but also a significant funding investment. • It is possible that too much continued focus on breast cancer, outside of the broader field of cancer research, will have some negative consequences for scientific advancements that are important for breast cancer (knowledge and methods). • The variation in scope and priorities within the national versus provincial/territorial funding contexts may present challenges. A small number of key informants mentioned issues related to provincial differences (e.g., smaller provinces challenged to fit their priorities and their funding dollars into larger-scale initiatives). • The diversity among the funding bodies may present a challenge. For example, some distribute funds and their recipients decide what research to support, compared to other organizations that more directly support individual topics and studies. • Role clarity is an identified pre-requisite for successful collaboration. Examples of such issues for clarity include: who participates, what is the process for inclusion, which organization/s leads, in the development of a national research frame work; do participants speak as individuals or as organizational representatives with decision-making authority; and the role of the CBCRA as a possible coordinator versus a ‘voting member”. • There may be “turf” issues in general that will require objective leadership and clear terms of reference. • Limited attention was given to ensuring an evaluation system is in place for assessing the effectiveness of a potential national framework. This stands in contrast to the salience attached to clear goals, accountability and a value-add perspective on more collaborative work. The full report on Breast Cancer Research Priorities: A survey of organizations funding breast cancer research in Canada and related key informant interviews is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).

Appendix
Organizations Self-Identifying in the Web-based Survey Those responding to the survey were given the opportunity to identify themselves. Fifteen of the 18 did so, as follows: National Organizations • Canadian Institutes of Health Research (CIHR) • NCIC Provincial Organizations • Nova Scotia Health Research Foundation • Ontario Ministry of Research and Innovation • Saskatchewan Health Research Foundation • Fonds de la Recherche en Santé du Québec Cancer Care Agencies • Cancer Care Program, Eastern Health • Saskatchewan Cancer Agency Research Institutes • Segal Cancer Centre-Jewish General Hospital • Ontario Institute for Cancer Research

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NGO’s / Charitable Foundations • CURE Foundation • Breast Cancer Society of Canada • The Cancer Research Society • Rethink Breast Cancer • Canadian Cancer Society Newfoundland and Labrador Division (b) Key Informants National Organizations Dr. Joy Johnson Dr. Heather Bryant Ms. Jessica Hill Scientific Director Vice–President, Cancer Control CEO Canadian Institutes of Health Research – Institute of Gender and Health Canadian Partnership Against Cancer Canadian Partnership Against Cancer Campbell Family Institute for Breast Cancer Research Institut du cancer de Montréal, Hôpital Notre-Dame Queens University Terry Fox Research Institute The Princess Margaret Hospital Foundation Canadian Breast Cancer Foundation BC/Yukon Region Canadian Cancer Society - Ontario Division National Cancer Institute of Canada ReThink Breast Cancer The Cancer Research Society

Research Institutes Dr. Tak Mak Director Dr. Anne Marie Mes-Masson Centre de recherche CHUM Dr. Elizabeth Eisenhauser Director, Investigational New Drug Program, NCIC Clinical Trials Group Dr. Victor Ling Scientific Director NGOs / Charitable Organizations Ms. Christine Lackey Vice President, Strategic Initiatives Ms. Jan Engemoen CEO Mr. Peter Goodhand CEO Dr. Michael Wosnick Executive Director Ms. Mary-Jo DeCoteau Executive Director Dr. Mario Chevrette President

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Mapping The Future
Research Priorities identified by Funding Organizations
CSO Category (1) and corresponding Cancer Care Continuum categories (2)
1. Biology *Prevention *Diagnosis *Treatment

CSO Code (3)
1.1 Normal Functioning 1.2 Cancer Initiation: Alterations in Chromosomes 1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes 1.4 Cancer progression and metastasis

Funding organizations’ perspectives on breast cancer research priorities % rating priority as very important; [x] overall rating in importance; self-identified current and emerging priorities

1.4 Early Detection of Metastasis Disease (#5) – 50% [3] 1.4 Ability to metastasize (#19) – 33.3%

1.5 Resources and Infrastructure Emerging Priority Genomics

Policy Influencers’ Perspectives on Breast Cancer Research

7. Scientific model systems *Prevention *Diagnosis *Treatment

7.1 Development and characterization of model system 7.2 Applications of model systems 7.3 Resources and infrastructure related to scientific model systems 2.1 Exogenous Factors in the Origin and Cause of Cancer 2.2 Endogenous Factors in the Origin and Cause of Cancer 2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors CSO Code³ 2.4 Resources and Infrastructure related to etiology Emerging Priority

7.1 Animal models of breast cancer progression (#6) – 22.2%

2. Etiology *Prevention *Diagnosis

2.1/2.3 Exposure to risk factors (#18) – 27.8% 2.1/2.3 Exposure to risk factors (#18) – 27.8% Genomics

National Breast Cancer Research Summit | Results

Mapping The Future
Research Priorities identified by Funding Organizations
CSO Category (1) and corresponding Cancer Care Continuum categories (2)
3. Prevention *Prevention *Treatment

CSO Code (3)
3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk

Funding organizations’ perspectives on breast cancer research priorities % rating priority as very important; [x] overall rating in importance; self-identified current and emerging priorities

3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2% 3.1 Lifestyle influence on breast cancer (#15) – 27.8% 3.1 Exposure to risk factors (#18) – 27.8%

3.2 Nutritional science in cancer prevention 3.3 Chemoprevention 3.4 Vaccines 3.5 Complementary and Alternative Prevention Approaches 3.6 Resources and Infrastructure related to prevention Current Priority Emerging Priority

3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2% 3.3 Clinical prevention trials in high risk women (#17) – 27.8%

Policy Influencers’ Perspectives on Breast Cancer Research
Prevention Environmental exposure

4. Early detection, diagnosis and prognosis *Screening *Treatment *Diagnosis

4.1 Technology development and/or marker discovery

4.1/4.2 Biomarkers (#1) 55.6% [1] 4.1 Breast cancer subtypes (#2) – 33.3% 4.1 Breast cancer heterogeneity (#8) – 16.7% 4.1/4.2 Biomarkers (#1) 55.6% [1] 4.2 Lifestyle influence on breast cancer (#15) – 27.8% 4.3 Screening tools for high risk women (#4) – 33.3% 4.4 Molecular pathology platforms (#16) – 38.9% Early Detection Genomics

4.2 Technology and/or marker evaluation with respect to fundamental parameters of method CSO Code³ 4.3 Technology and/or marker testing in a clinical setting 4.4 Resources and infrastructure related to detection, diagnosis or prognosis Current Priority Emerging Priority

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Mapping The Future
Research Priorities identified by Funding Organizations
CSO Category (1) and corresponding Cancer Care Continuum categories (2)
5. Treatment *Treatment 5.2 Localized therapies: clinical applications 5.3 Systemic therapies: discovery and development 5.4 Systemic therapies: clinical applications 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3] 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3% 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3] 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3% 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3] 5.4/5.7 Phase I and II intervention trials (#14) – 38.9% Policy Influencers’ 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%

CSO Code (3)
5.1 Localized therapies: discovery and development

Funding organizations’ perspectives on breast cancer research priorities % rating priority as very important; [x] overall rating in importance; self-identified current and emerging priorities

5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3] 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%

5.5 Combinations of localized and systemic therapies 5.6 Complementary and alternative treatment approaches 5.7 Resources and infrastructure related to treatment Emerging Priority

Perspectives on Breast Cancer Research 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]

5.4/5.7 Phase I and II intervention trials (#14) – 38.9% Targeted therapies Genomics 6 (all) KT of intervention (#7) – 38.9% [2] 6.1 Health care delivery (#10) 33.3% [3] 6.1 Survivorship interventions (#12) – 16.7% 6 (all) KT of intervention (#7) – 38.9% [2]

6. Cancer control, survivorship and outcomes *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

6.1 Patient care and survivorship issues

6.2 Surveillance 6.3 Behavior

CSO Code³

6 (all) KT of intervention (#7) – 38.9% [2] 6 (all) KT of intervention (#7) – 38.9% [2] 6.4 KT processes (#13) -33.3% 6.4/6.5/6.7 Inequities (#11) – 11.1% 6 (all) KT of intervention (#7) – 38.9% [2]

6.4 Cost analyses and health care delivery

National Breast Cancer Research Summit | Results

Mapping The Future
Research Priorities identified by Funding Organizations
CSO Category (1) and corresponding Cancer Care Continuum categories (2) Funding organizations’ perspectives on breast cancer research priorities % rating priority as very important; [x] overall rating in importance; self-identified current and emerging priorities

CSO Code (3)
6.5 Education and communication 6.6 End-of-life care 6.7 Ethics and confidentiality in cancer research 6.8 Complementary and alternative approaches for supportive care of patients and survivors 6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research Current Priority Emerging Priority

6 (all) KT of intervention (#7) – 38.9% [2] 6.4/6.5/6.7 Inequities (#11) – 11.1% 6 (all) KT of intervention (#7) – 38.9% [2] 6 (all) KT of intervention (#7) – 38.9% [2] 6.4/6.5/6.7 Inequities (#11) – 11.1% 6 (all) KT of intervention (#7) – 38.9% [2]

Policy Influencers’ 6 (all) KT of intervention (#7) – 38.9% [2]
Translational Research Evaluation of Supportive Care Health services/new models

Perspectives on Breast Cancer Research

1 The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp). 2 The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. 3 Each CSO category is broken down further into “codes”.

CSO Code³

See www.cancerportfolio.org/cso.jsp for all details. In the table above, the number in parenthesis indicated the ranking of the priority.

4 The following 19 Strategic Research Priorities were identified at CBCRA December 1-2, 2006 Strategic Research Agenda Workshop (SRAW).

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Mapping The Future
Research Priorities identified by Funding Organizations
1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression 2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations 3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk 4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk 5- “EARLY DETECTION OF METASTATIS DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent 6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression 7- “KT INTERVENTIONS”: Knowledge transfer: Increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists 8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale 9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment 10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do? 11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators 12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions 13- “KT PROCESSES”: What are the best Knowledge Translation processes in different settings, in order to influence practices, policies? 14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention 15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level? 16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform 17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women 18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies 19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?

National Breast Cancer Research Summit |

Mapping The Future
Highlights from Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer
Brian Rush & Nancy Dubois, VIRGO Planning and Evaluation Consultants (May 2008) Introduction
The Canadian Breast Cancer Research Alliance (CBCRA) is convening a National Summit in Toronto on May 26 and 27, 2008. In preparation, the CBCRA undertook a multi-pronged process to conduct research and gather perspectives and opinions concerning key issues in breast cancer today, including a survey aimed getting the opinions of breast cancer survivors, family members/loved ones and others involved in breast cancer area (e.g., caregivers, health professionals, volunteers). This report presents the findings from this survey.

Methods
A web-based survey questionnaire was designed based on the identified needs for information (e.g., coverage of topics; level of detail required), and relevant literature/reports on breast cancer research and needs of survivors and family members. Input was provided into the questionnaire from multiple perspectives including researchers, breast cancer survivors, family members, and executives of breast cancer stakeholder organizations. Following a pilot test and a professional “plain language” review the questionnaire was posted for Internet access. The survey was available in both English and French. The web links to the survey advertised/promoted by eleven breast cancer organizations across Canada. The survey site was open for a total of 20 days and 808 individuals entered the site and completed the survey in its entirety. The survey was successful in capturing a diverse group of people in terms of age, geographic representation across Canada, and experiences related to breast cancer. It is important to note, however, that the survey was not designed to randomly sample breast cancer survivors and others affected by breast cancer. Importantly, the final sample is comprised of a group of breast cancer survivors of younger age than is the norm in the population – as reflected in both the large percentage who are pre-menopausal and the relatively short duration since initial diagnosis. Caution must therefore be exercised in generalizing the findings to all breast cancer survivors and others affected by breast cancer living in the community in Canada.

Results
(i) What is the perceived importance of the main topic areas for breast cancer research? The three categories of “treatment”, “screening” and “risk/factors/prevention” were rated highest by respondents, followed by lab research. The two categories of “supportive care and quality of life” and “health systems and health services”, received lower points, on average. These are relative ratings of perceived importance and not an indicator of absolute importance to participants. (ii) Are the demographic characteristics of the respondent associated with the perceived importance of major categories of breast cancer research? • There were no difference according to the age category of the respondent; • English language respondents gave higher ratings to “risk factors and how to prevent breast cancer” compared to their French language counterparts who gave higher ratings to “breast cancer treatment”; • There was also a statistically significant regional difference that reflected lower ratings on average for Quebec for “risk factors and how to prevent breast cancer” and correspondingly higher ratings for “breast cancer treatment”. (iii) Is the respondent’s experience with breast cancer associated with the perceived importance of major categories of breast cancer research? • Survivors and Family Members gave higher average ratings to “breast cancer treatment”; • The Survivor group gave slightly lower ratings to “health systems/services”; • Participants who had experienced their initial diagnosis of breast cancer less than two years ago gave higher rating to “breast cancer treatment” compared to women with longer histories; • Women who had been diagnosed before menopause gave lower ratings on average to “screening for breast cancer” and higher rating for “breast cancer treatment” compared to women diagnosed after menopause; • There were no differences in the average ratings given to each type of research for women who had been diagnosed a second time; the length of time since second diagnosis, or whether the woman had experienced metastatic breast cancer.

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(iv) What is the level of support given to specific sub-topics within the major categories of breast cancer research? Respondents assigned different levels of support to each of several sub-topics within the major categories. Areas receiving high support in each of the categories include: Risk factors and how to prevent breast cancer: • How family history relates to the risk of breast cancer (genetic research) • How environmental approaches can reduce the risk of breast cancer • How the food we eat and body weight relate to the risk of breast cancer Early detection: • Finding new ways to ensure that cancer that spreads to other parts of the body (metastatic breast cancer) is found early • Finding better ways to screen for breast cancer that would improve on mammography • Finding ways to detect breast cancer that cause less discomfort for women and give clearer results Breast cancer treatment: • Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) • Research on new therapies (such as vaccines and gene therapies) • Research on new ways to do surgery and radiation treatments Supportive care and quality of life: • Research on ways to manage pain • Research on ways to reduce pain and swelling in the treated area (after cancer treatments or surgery) • Research on the support that women need during the course of their disease Health systems and health services: • Research on ways to keep health care providers up-to-date on the best treatment and support methods • Research into plans and policies that will ensure there are enough trained health care professionals for treatment and support • Research that helps to define the best balance of prevention, treatment, support, and end-of-life care in each community Lab research (also called basic research): • Research into how breast cancer spreads to other parts of the body (metastasis and invasion) • Research into cancer stem cells • Research into how breast cancer develops (the biology of breast cancer) (v) What topic areas for breast cancer research did respondents identify as being important? Survey participants were offered the opportunity to identify additional topics they felt were not adequately covered in the survey questions. They also responded to an open-ended question at the conclusion of the survey asking for any additional input they would like to provide to improve breast cancer research in Canada. These qualitative data were coded into the broad categories of breast cancer research with the responses falling into the two broad categories of “health services/health systems” and “supportive care/quality of life” being mentioned the most frequently. More detailed coding yielded the following highlights in terms of specific topic areas of high importance for participants. • environmental exposure including geographic variation and food supply • screening/getting a diagnosis for young women • investigating why a mammogram causes so much pain/discomfort or to just improve on mammogram • complementary/alternative therapies (e.g., acupuncture, massage, naturopathic, herbal, meditation, blending Eastern and Western medicine) • causes and treatment of lymphadema • better targeted drugs and treatment/less side effects/less toxic-harsh • psychosocial and support in general; stress management, mental health issues • family and caregiver support and support for men in general • better and more sensitive communication to patients • reducing the amount of time between initial diagnosis and treatment • triple negative breast cancer

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Mapping The Future
• breast cancer among young/pre-menopausal women • education to the public (i.e., beyond screening per se)

Highlights of the feedback concerning breast cancer research and research funding included: • the need for more funding or more research in general • investing more directly in research and treatment and minimizing administration/overhead/big salaries • more coordination of research (e.g., sharing info across teams; more centres of excellence and less small/territorial research and pools of money; building upon and not duplicating international work).

Conclusions:
Several study limitations must be considered in interpreting the findings from this survey. These include: • The younger age and larger proportion of women with pre-menopausal breast cancer than would have been expected. How ever, there were no age difference in quantitative results obtained and few differences based on number of years since initial diagnosis or pre- versus post-menopausal histories. Thus, it is not clear whether the results of the survey would have been substantively different with a more representative sample. • Sub-topics rated by respondents within each of the broad categories of breast cancer research did not capture the rich and varied spectrum of research within these areas. This is important to keep in mind when comparing these findings with priorities identified by other data collection strategies and perspectives (e.g., funders). • The inter-relationship across the many coded categories is not evident in the way the data are coded and displayed. Examples of this inter-connectivity are concerns about the availability of MRI and related issues about the limitations of mammograms; and financial barriers in the health system and mental and emotional stress about financial consequences of a breast cancer diagnosis supports needed in that area. • The challenge in the interpretation of the findings with respect to lab/basic research is also acknowledged. When asked to rate topics in relative terms it is likely that the respondents gave higher ratings to things they felt were closer to their own experience, thereby scoring the domains of prevention, screening and treatment higher. Respondents may have been challenged to make the connection between lab/basic research and the more familiar domains of prevention, screening and/or treatment. Certainly the results do not diminish the importance of this work in the breast cancer area.

Within these constraints the following points are highlighted: Balanced approach: It is interesting that the three categories of research that were given the most points on average in terms of importance covered the spectrum of treatment, screening and prevention. This would support a balanced funding portfolio across this spectrum. Priorities across the broad areas of research: Although research studies on breast cancer report many important issues related to health services for breast cancer (e.g., lack of coordination/communication across providers) as well as supportive care and quality of life (e.g., need for psychosocial supports), on the whole, these two categories scored lower than the others. For the majority of respondents, prevention, screening and treatment might be viewed as the “need to know”, whereas health systems and supportive care might be seen as less critical in terms of overall impact. The above notwithstanding, the issues of supportive care/quality of life and health services/systems clearly came to the fore in the qualitative data. This reinforces their importance and salience for the respondents even though in relative terms the other areas may be more important. For reasons identified above, the results do not speak clearly to the relative importance of lab/basic research which is considered foundational to much of the work in the breast cancer area. Health systems/services: There were many salient issues brought forward with respect to the health care system, including issues of waiting time; coordination/integration; financial barriers; supply of qualified people; wide variation in protocols and quality of services; significant challenges in rural/remote areas many issues focused on the knowledge; and communication skills of physicians and other professionals working with women going through the trauma of the diagnostic and treatment experience. It is anticipated that the results of this survey and other information collected for the National Summit will be cross-referenced to the categories of research used in the Common Scientific Outline (CSO). Since health systems/services research topics are subsumed under other broad categories (mostly “cancer control, survivorship and outcomes”) it will be important to ensure that the many issues related relevant for a health systems research agenda do not get lost in the translation process.

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Some specific areas of special concern: • The broad topic of breast cancer and younger women was very important to a high percentage of respondents and several sub-issues were identified within the categories of prevention, screening, treatment, supportive care, and health services/systems. • The importance of research on metastatic cancer also cut across several areas. • The issue of psychosocial and other supports needed before, during and after treatment is seen as critically important. • More research into environmental causes and risk factors was seen as extremely important. • More research seen as needed concerning a wide range of alternative and complementary treatment approaches.

With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern about the slow progress on many important issues and the need to focus research efforts. The full report on Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).

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Research Priorities Indentified by Survivors

Mapping The Future

CSO Category¹ and corresponding Cancer Control Continuum categories²
1. Biology *Prevention *Diagnosis *Treatment

CSO Code³
1.1 Normal Functioning 1.2 Cancer Initiation: Alterations in Chromosomes 1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes 1.4 Cancer progression and metastasis

Survivors’ Perspectives on Breast Cancer Research

1.3 Research into cancer stem cells 1.4 Finding new ways to ensure that cancer that spreads to other parts of the body (metastatic breast cancer) is found early 1.4 Risk/prevention of recurrence; why recurrence after 5 years?

1.5 Resources and Infrastructure

CSO Category¹ and corresponding Cancer Control Continuum categories²
7. Scientific model systems *Prevention *Diagnosis *Treatment

CSO Code³
7.1 Development and characterization of model system 7.2 Applications of model systems 7.3 Resources and infrastructure related to scientific model systems

Survivors’ Perspectives on Breast Cancer Research

CSO Category¹ and corresponding Cancer Control Continuum categories²
2. Etiology *Prevention *Diagnosis

CSO Code³
2.1 Exogenous Factors in the Origin and Cause of Cancer

Survivors’ Perspectives on Breast Cancer Research
2.1 How the food we eat and body weight relate to the risk of breast cancer? 2.1 Research into the effects of food and exercise on how breast cancer develops 2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing?

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CSO Category¹ and corresponding Cancer Control Continuum categories²

CSO Code³
2.2 Endogenous Factors in the Origin and Cause of Cancer 2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors

Survivors’ Perspectives on Breast Cancer Research
2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing? 2.3 Genetic risk factors; study people with no family history 2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing?

2. Etiology (cont) *Prevention *Diagnosis

2.4 Resources and Infrastructure related to etiology

CSO Category¹ and corresponding Cancer Control Continuum categories²
3. Prevention *Diagnosis *Treatment

CSO Code³
3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk 3.2 Nutritional science in cancer prevention 3.3 Chemoprevention 3.4 Vaccines 3.5 Complementary and Alternative Prevention Approaches 3.6 Resources and Infrastructure related to prevention

Survivors’ Perspectives on Breast Cancer Research
3.1/3.2 How environmental approaches (including geographic variation) can reduce the risk of breast cancer 3.1/3.2 How environmental approaches (including geographic variation) can reduce the risk of breast cancer

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Mapping The Future
CSO Category¹ and corresponding Cancer Control Continuum categories²
4. Early detection, diagnosis and prognosis *Screening *Treatment *Diagnosis

CSO Code³
4.1 Technology development and/or marker discovery 4.2 Technology and/or marker evaluation with respect to fundamental parameters of method 4.3 Technology and/or marker testing in a clinical setting

Survivors’ Perspectives on Breast Cancer Research
4.1 Research into triple negative breast cancer

4.3 Finding better ways to screen for breast cancer that would improve on mammography 4.3 Finding ways to detect breast cancer that cause less discomfort for women and give clearer results

4.4 Resources and infrastructure related to detection, diagnosis or prognosis

CSO Category¹ and corresponding Cancer Control Continuum categories²
5. Treatment *Treatment

CSO Code³
5.1 Localized therapies: discovery and development

Survivors’ Perspectives on Breast Cancer Research
5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) 5.1 Research into triple negative breast cancer 5.1/5.2 Research on new therapies (such as vaccines and gene therapies) 5.1/5.2 Research on new ways to do surgery and radiation treatments

5.2 Localized therapies: clinical applications

5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) 5.1/5.2 Research on new therapies (such as vaccines and gene therapies) 5.1/5.2 Research on new ways to do surgery and radiation treatments

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CSO Category¹ and corresponding Cancer Control Continuum categories²

CSO Code³
5.3 Systemic therapies: discovery and development

Survivors’ Perspectives on Breast Cancer Research
5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) 5.3/5.4 Research on hormonal therapy (such as tamoxifen) 5.3/5.4 Better targeted drugs and treatment/less side effects/less toxic-harsh

5. Treatment (cont) *Treatment

5.4 Systemic therapies: clinical applications

5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) 5.3/5.4 Research on hormonal therapy (such as tamoxifen) 5.3/5.4 Better targeted drugs and treatment/less side effects/less toxic-harsh

5.5 Combinations of localized and systemic therapies

5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer) 5.6 Complementary /alternative therapies (acupuncture, massage, naturopathic, herbal, meditation, blending Eastern and Western medicine)

5.6 Complementary and alternative treatment approaches

5.7 Resources and infrastructure related to treatment

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Mapping The Future
CSO Category¹ and corresponding Cancer Control Continuum categories²
6. Cancer control, survivorship and outcomes *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

CSO Code³
6.1 Patient care and survivorship issues

Survivors’ Perspectives on Breast Cancer Research
6.1 Research on more aftercare /postdischarge support/physio referral, brief follow up even after five year mark 6.1 Research on ways to manage pain 6.1 Research on ways to reduce pain and swelling in the treated area (after cancer treatments or surgery) 6.1 Research on treatment of lymphadema 6.1 Research on the support that women need during the course of their disease 6.1 Research on psychosocial and support in general; stress management, mental health issues 6.1 Research on family support, caregiver support, support for men 6.1 Research on financial issues/aid (e.g. child care; employment insurance) 6.1 Research on greater understanding of impact on sexuality, body image, self esteem after mastectomy, sex drive 6.1 Research on longer term survivorship issues; reintegration in general 6.1 Research on giving women a bigger role in their own recovery 6.1 Research on understanding the impact of breast cancer on women by development stage

6.2 Surveillance 6.3 Behavior

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CSO Category¹ and corresponding Cancer Control Continuum categories²
6. Cancer control, survivorship and outcomes (cont) *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

CSO Code³
6.4 Cost analyses and health care delivery

Survivors’ Perspectives on Breast Cancer Research
6.4 Research on issues in smaller or isolated communities (second opinion, waiting time, lack of personnel, outdated equipment) 6.4 Research into plans and policies that will ensure there are enough trained health care professionals for treatment and support 6.4 Research that helps to define the best balance of prevention, treatment, support, and end-of-life care in each community 6.4 Research on ways to ensure that care is provided at all levels of the health care system 6.4 Research on screening/getting a diagnosis for young women (under 40, under 50) 6.4 Research on amount of time between initial diagnosis and treatment 6.4 Research on different models of care: more coordination or communication between players and in hospitals; more clinical teams and less individual physicians (fewer opportunity for mistakes; opportunity for second opinion)

6.5 Education and communication

6.5 Need for more education of young women/pre-menopausal about breast cancer 6.5 Education of the public about the disease, prevention and its risk factors 6.5 Reminders/ information to people to go for testing; educating people specifically about self-exams/testing 6.5 Knowledge level of health care professional (e.g. teach basic facts detection methods, risks for young women, alternative therapies)

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Mapping The Future
CSO Category¹ and corresponding Cancer Control Continuum categories²

CSO Code³

Survivors’ Perspectives on Breast Cancer Research
6.5 Research on ways to keep health care providers up-to-date on the best treatment and support methods 6.5 Better and more sensitive communication to patients (e.g. surgeon to patients; clear statistical information; less technical and more humane); time to explain feedback from all tests, more trust in women’s judgment 6.5 Access to accurate/ less contradictory information (via the Internet, other means); more plain language informa1tion; more stats available to the public

6. Cancer control, survivorship and outcomes (cont) *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

6.6 End-of-life care 6.7 Ethics and confidentiality in cancer research 6.8 Complementary and alternative approaches for supportive care of patients and survivors 6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research

¹ The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp). ² The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. ³ Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.

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Mapping The Future
Summary of Canadian Breast Cancer Researcher Priorities
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken and documented a number of data gathering activities including two specific initiatives designed to determine breast cancer research priorities, one hosted by CBCRA in December 2006 and the other hosted by NCIC in May 2007.

2- Overview of Findings
Somewhat similar approaches were taken in each case: attempting to define the state of knowledge and important considerations and then bringing together a group of wise individuals to determine priorities. Details of the methodology and limitations of both studies, together with the results are included below. The results have also been re-classified according to the Common Scientific Outline (a classification system organized around seven broad areas of scientific interest in cancer research, developed by the International Cancer Research Portfolio, a joint initiative of International Cancer Research Funding Organizations) and are displayed in the attached summary table. i] CBCRA: Strategic Research Agenda Workshop (SRAW) - December 2006 Seventy-two participants gathered together to identify the research priorities likely to have the most impact on breast cancer in the near future. 19 such research priorities were identified.

Methodology

In preparation for the workshop, CBCRA’s Research Advisory Committee members and other experts in specific areas of breast cancer research were asked to prepare summary documents describing the “State of the Union” in breast cancer research in each of eight key areas. The workshop began with two keynote addresses on the current state of breast cancer research and the accomplishments of CBCRA since its inception in 1993. In the first half of the workshop, participants were divided into discipline-specific groups and tasked with identifying (1) the key opportunities, barriers and gaps to be considered by CBCRA in developing its future research agenda and (2) the key research themes that should be addressed by research in the future. In the second half of the workshop, participants were divided into interdisciplinary groups and asked to refine the research priorities identified above and to present a short list of five priorities to all participants, who then designated their top three priorities by vote. This process led to the identification and ranking of 19 future research priorities, listed below. Although every attempt was made to include participants from all areas of breast cancer research in addition to breast cancer stakeholder and survivors, the findings obtained are a direct reflection of the areas of expertise of the individuals who participated, and a different group of participants might have led to slightly different results.

Results:

The following 19 Strategic Research Priorities were identified during the Strategic Research Agenda Workshop (SRAW): 1- Biomarkers 2- Breast Cancer Subtypes 3- Lifestyle Changes In Subpopulations 4- Screening Tools For High Risk Women 5- Early Detection Of Metastatic Disease Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent

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6- Animal Models Of Breast Develop better animal models for breast cancer progression Cancer Progression 7- Knowledge Transfer Interventions Increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists 8- Breast Cancer Heterogeneity Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale 9- Microenvironment Of Metastatic Therapy for metastatic breast cancer targeted at interaction between tumour and its Breast Cancer microenvironment 10- Health Care Delivery How is care currently being delivered? Are we doing the things we ought to do? 11- Inequities Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators 12- Survivorship Interventions Survivorship: better understanding of issues and design of interventions 13- KT Processes What are the best Knowledge Translation processes in different settings, in order to influence practices, policies? 14- Phase I And II Intervention Trials Focus on multi-centre Phase I and II trials to test novel paradigms for intervention 15- Lifestyle Influence On How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and Breast Cancer effectiveness of therapy at the molecular level? 16- Molecular Pathology Platforms Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform 17- Clinical Prevention Trials In Clinical prevention trials in genetically high risk women High Risk Women 18- Exposure To Risk Factors Biomarkers of exposure to risk factors (environment) through long term cohort studies 19- Ability To Metastasize Does the ability to metastasize develop during growth at the primary site? The complete proceedings of this workshop are posted on the CBCRA website. ii] The National Cancer Institute of Canada (NCIC): Breast Cancer Research Summit May 2007 NCIC’s strategic plan, approved in June 2005, requires the organization to periodically review its research portfolios to determine future directions and priorities. As part of such a review of its breast cancer research portfolio, a series of key informant interviews were conducted together with a two-day meeting in early, 2007. Limitations to the findings include the recognition that in the timeframe in which the process was conducted, the appropriately broad and representative cross-section of the breast cancer researcher community was not available. Some participants were both interviewed and participated in the meeting – and no attempt was made to control the weighting of their data in the final analysis. Finally, within the meeting, the small group discussions were very different, resulting in concerns that perhaps the understanding of the exercise was not shared.

Methodology:

Participants in both the key informant interviews and the research summit were chosen for their ability to represent different aspects or components of the breast cancer research community: breast cancer areas, clinical settings, policy/advocacy arenas and survivors. A total of 31 structured phone interviews were conducted with a purposeful sample of researchers, clinicians, policy makers, survivors and funders. The interviews consisted of six open-ended questions designed to identify directions in breast cancer research over the next 10-15 years as well as current opportunities and/or barriers. The same two interviewers created a coding framework, refined through several iterations and then one interviewer coded all the interviews and summarized the themes identified by interview question and by major coding framework theme. The summit, attended by 22 participants, began with a series of presentations designed to provide background information and context to seed the discussions. The presentations provided context for breast cancer research funding in Canada as well as an example of how a California breast cancer research funding agency had identified its strategic focus. Roundtable discussions were then held to identify research breakthroughs, barriers and the ‘low hanging’ fruit that, if funded, would lead to rapid results. Conversations at the Summit were analyzed, and then findings compared and contrasted with those of the key informant interviews.

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Mapping The Future
Results:
The following three clusters of priorities emerged as being of importance to both key informants and summit participants. A fourth generic cluster has also been created to capture miscellaneous common areas of concern/importance: 1- Prevention 1.1 Behavioural interventions to reduce risk 1.2 Pharmaco-prevention 1.3 Studies on the role of the environment 2- Early detection and treatment 2.1 Targeted therapies: smaller populations for treatment sparing and reduced toxicity 2.2 Tailored or combination therapies for treatment sparing and reduced toxicity 2.3 Advances in basic research (understanding genetic interactions and biological pathways and the identification of biomarkers) were described as key to developments in detection, diagnosis and treatment 2.4 Molecular specificity and functionality : knowing if cancer exists, the behaviour pattern of the tumour, and what therapies, if any, are required 2.5 Screening tools and process: diagnostic sparing. Two tier to identify high risk candidates first/approach to triage 3- Survivorship 3.1 Evidence-based holistic support to encompass whole individuals based on evidence (integrating psychosocial, financial, treatment, etc) 3.2 Post-treatment complications, both medical and non-medical. Managing long term morbidity. 3.3 Improved understanding of tumour dormancy 3.4 Identification of support required at time of diagnosis, during and after treatment and long term, i.e. across the spectrum. 4- Other 4.1 Breast cancer modeling 4.2 Molecular imaging 4.3 Target marginalized and subpopulations for prevention, detection and treatment 4.4 Exploit Canadian resources e.g. tumour banks, correlative studies. Coordinate databases and making them more accessible. 4.5 Need to make the clinical trial system more effective and faster, e.g. by creating a central ethics board, blending Phases I and II, blending Phases III and IV, increasing enrolment, modernizing collection of tissue and blood, providing support to cor relative studies. 4.6 Move beyond descriptive Quality of Life studies and undertake intervention research 4.7 Uptake and translation from laboratory to clinic

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Research Priorities Identified by Researchers

Mapping The Future

CSO Category¹ and corresponding Cancer Control Continuum categories²
1. Biology *Prevention *Diagnosis *Treatment

CSO Code³
1.1 Normal Functioning 1.2 Cancer Initiation: Alterations in Chromosomes 1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes 1.4 Cancer progression and metastasis

CBCRA Strategic Initiative Priorities (2006 SRAW)4

NCIC Summit Priorities (2007)

1.4 Early Detection of Metastasis Disease (#5) 1.4 Ability to metastasize (#19)

1.4 Tumor dormancy

1.5 Resources and Infrastructure

1.5 Translation lab-clinic

CSO Category¹ and corresponding Cancer Control Continuum categories²
7. Scientific model systems *Prevention *Diagnosis *Treatment

CSO Code³
7.1 Development and characterization of model system 7.2 Applications of model systems 7.3 Resources and infrastructure related to scientific model systems

CBCRA Strategic Initiative Priorities (2006 SRAW)4
7.1 Animal models of breast cancer progression (#6)

NCIC Summit Priorities (2007)
7.1 Breast cancer modeling

7.3 Translation lab-clinic

CSO Category¹ and corresponding Cancer Control Continuum categories²
2. Etiology *Prevention *Diagnosis

CSO Code³
2.1 Exogenous Factors in the Origin and Cause of Cancer 2.2 Endogenous Factors in the Origin and Cause of Cancer 2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors 2.4 Resources and Infrastructure related to etiology

CBCRA Strategic Initiative Priorities (2006 SRAW)4
2.1/2.3 Exposure to risk factors (#18)

NCIC Summit Priorities (2007)
2.1 Environmental/ occupational exposure

2.1/2.3 Exposure to risk factors (#18) 2.4 Epidemiological resources pertaining to Etiology 2.4 Translation lab-clinic

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CSO Category¹ and corresponding Cancer Control Continuum categories²
3. Prevention *Prevention *Treatment

CSO Code³

CBCRA Strategic Initiative Priorities (2006 SRAW)4

NCIC Summit Priorities (2007)
3.1 Environmental/ occupational exposure 3.1 Behavioural interventions to reduce risk

3.1 Interventions to prevent cancer: 3.1/3.2 Lifestyle changes in personal behaviours that affect subpopulations (#3) cancer risk 3.1 Lifestyle influence on breast cancer (#15) 3.1 Exposure to risk factors (#18) 3.2 Nutritional science in cancer prevention 3.3 Chemoprevention 3.4 Vaccines 3.5 Complementary and Alternative Prevention Approaches 3.6 Resources and Infrastructure related to prevention 3.3 Clinical prevention trials in high risk women (#17)

3.3 Pharmaco-prevention

3.6 Translation lab-clinic

CSO Category¹ and corresponding Cancer Control Continuum categories²
4. Early detection, diagnosis and prognosis *Prevention *Diagnosis *Treatment

CSO Code³

CBCRA Strategic Initiative Priorities (2006 SRAW)4

NCIC Summit Priorities (2007)
4.1 Targeted and tailored therapies 4.1/4.2/4.3 Advances in basic research

4.1 Technology development and/or 4.1/4.2 Biomarkers (#1) marker discovery 4.1 Breast cancer subtypes (#2) 4.1 Breast cancer heterogeneity (#8) 4.2 Technology and/or marker 4.1/4.2 Biomarkers (#1) evaluation with respect to fundamental parameters of method 4.2 Lifestyle influence on breast cancer – effectiveness of therapy (#15) 4.3 Technology and/or marker testing in a clinical setting 4.3 Screening tools for high risk women (#4)

4.1/4.2/4.3 Advances in basic research

4.1/4.2/4.3 Advances in basic research 4.3 Molecular imaging

4.4 Resources and infrastructure related to detection, diagnosis or prognosis

4.4 Molecular pathology platforms (#16)

4.4 Screening tools and process 4.4 Tumour banks and databases 4.4 Translation lab-clinic

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Mapping The Future
CSO Category¹ and corresponding Cancer Control Continuum categories²
5. Treatment *Treatment

CSO Code³
5.1 Localized therapies: discovery and development

CBCRA Strategic Initiative Priorities (2006 SRAW)4
5.1-5.5 Microenvironment of metastatic breast cancer (#9) 5.1/5.2/5.3/5.4 BC subtypes (#2)

NCIC Summit Priorities (2007)

5.2 Localized therapies: clinical applications

5.1-5.5 Microenvironment of metastatic breast cancer (#9) 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2)

5.2/5.4 Targeted and tailored therapies 5.2/5.4 Advances in basic research 5.2/5.4 Molecular specificity

5.3 Systemic therapies: discovery and development

5.1/5.5 Microenvironment of metastatic breast cancer (#9) 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2)

5.4 Systemic therapies: clinical applications

5.1-5.5 Microenvironment of metastatic breast cancer (#9) 5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) 5.4/5.7 Phase I and II intervention trials (#14)

5.2/5.4 Targeted and tailored therapies 5.2/5.4 Advances in basic research 5.2/5.4 Molecular specificity

5.5 Combinations of localized and systemic therapies 5.6 Complementary and alternative treatment approaches 5.7 Resources and infrastructure related to treatment

5.1/5.5 Microenvironment of metastatic breast cancer (#9)

5.4/5.7 Phase I and II intervention trials (#14)

5.7 Tumor banks and databases 5.7 Clinical trials 5.7 Translation lab-clinic

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CSO Category¹ and corresponding Cancer Control Continuum categories²
6. Cancer control, survivorship and outcomes *Supportive care *Palliative care And across complete CCC for codes 6.4 and 6.5

CSO Code³
6.1 Patient care and survivorship issues

CBCRA Strategic Initiative Priorities (2006 SRAW)4
6 (all) KT of intervention (#7) 6.1 Survivorship interventions (#12)

NCIC Summit Priorities (2007)
6.1/6.4 Evidence-based support 6.1 Post-treatment complications 6.1/6.3/6.5 Support across the spectrum 6.1/6.4/6.5 Target sub-populations 6.1/6.3/6.6/6.8/6.9 QoL intervention research

6.2 Surveillance 6.3 Behavior

6 (all) KT of intervention (#7) 6 (all) KT of intervention (#7) 6.1/6.3/6.5 Support across the spectrum 6.1/6.3/6.6/6.8/6.9 QoL intervention research

6.4 Cost analyses and health care delivery

6 (all) KT of intervention (#7) 6.4 Health care delivery (#10) 6.4/6.5/6.7 Inequities (#11) 6.4/6.5 KT processes (#13)

6.1/6.4 Evidence-based support 6.1/6.4/6.5 Target sub-populations

6.5 Education and communication

6 (all) KT of intervention (#7) 6.4/6.5/6.7 Inequities (#11) 6.4/6.5 KT processes (#13)

6.1/6.3/6.5 Support across the spectrum 6.1/6.4/6.5 Target sub-populations 6.1/6.3/6.6/6.8/6.9 QoL intervention research

6.6 End-of-life care 6.7 Ethics and confidentiality in cancer research

6 (all) KT of intervention (#7) 6 (all) KT of intervention (#7) 6.4/6.5/6.7 Inequities (#11)

6.8 Complementary and alternative 6 (all) KT of intervention (#7) approaches for supportive care of patients and survivors 6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research 6 (all) KT of intervention (#7)

6.1/6.3/6.6/6.8/6.9 QoL intervention research 6.1/6.3/6.6/6.8/6.9 QoL intervention research

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Mapping The Future
(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp) (2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. (3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details (4) The following 19 Strategic Research Priorities were identified at CBCRA December 1-2, 2006 Strategic Research Agenda Workshop (SRAW). In the table above, the number in parenthesis indicated the ranking of the priority. 1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression 2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations 3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk 4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk 5- “EARLY DETECTION OF METASTATIC DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent 6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression 7- “KT INTERVENTIONS”: Knowledge transfer: Increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists 8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale 9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment 10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do? 11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators 12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions 13- “KT PROCESSES”: What are the best Knowledge Translation processes in different settings, in order to influence practices, policies? 14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention 15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level? 16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform 17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women 18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies 19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?

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Mapping The Future
“State of the research” in: Breast Cancer Early Detection
Prepared by: Dr. Martin Yaffe Senior Scientist, Department of Imaging Research Sunnybrook and Women’s College Health Sciences Centre, Toronto, ON January 2008 Developments in imaging
• Digital mammography (improved detection for women under age 50 and those with dense breasts) • Improved evidence of the mortality reduction from screening women in their 40s with mammography (Coldman et al. BC Screening Program) • Breast MRI (an accurate and effective way to screen women who are at high hereditary risk • PET CT for planning therapy • Better understanding of the role of breast density • Need to develop optimal screening strategies • Emergence of breast CT and tomosynthesis – techniques to provide 3-dimensional breast images • Research on imaging methods to assess response of tumours to neoadjuvant therapy

Molecular targeting
• Many markers have been identified • Preclinical work to create tools for detection • Emergence of Canadian research programs to develop molecular imaging for breast cancer detection and diagnosis

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“State of the research” in: Breast Cancer Epidemiology and Prevention
Prepared by: Dr. Norman Boyd Senior Scientist, Division of Epidemiology, Statistics and Behaviour, Ontario Cancer Institute, Toronto, ON January 2008
• The epidemiology of breast cancer has shown that the disease has both environmental and genetic causes, that “hormonal” exposures are important, and that some drugs can reduce the frequency of the disease. • Environmental causes are shown by the wide international variation in disease risk, and by changing rates of disease in migrants. The study of environmental causes is hampered by difficulties in measuring potentially relevant exposures. It has been suggested that priority areas for research include: 1) the development of methods to assess nutrient intake, energy expenditure, and intermediate markers; 2) the enhancement of cohort and cross-cultural studies; and 3) the development of criteria for the development of full-scale intervention trials (1). Few risk factors for breast cancer can be changed, but body weight, diet, alcohol intake, hormone use, and mammographic density, are examples of some that can.

• Family clustering of the disease suggests genetic causes of breast cancer. Some genes with strong effects on risk have been found, but they account for a small proportion of the disease. It is theoretically possible that a relatively small genetically pre disposed section of the population accounts for most cases of the disease, and some genes of low penetrance have now been reproducibly identified as associated with the disease. Gene-gene and gene-environment interactions may also be important in causing breast cancer, but are not well understood, and their study requires very large study populations, as well as resolution of the problems in measuring environmental exposures referred to above. • “Hormonal” events, such as menarche, parity and menopause, influence breast cancer risk. Most attention has been focused on estrogen, and higher levels are associated with a modest increase in risk of breast cancer in pre and postmenopausal women. Several other hormones, including prolactin and the growth-hormone-IGF axis, may be involved. Little is known about the factors that regulate levels of exposure to any of these hormones. • Tamoxifen and raloxifene have been shown to reduce the frequency of breast cancer in selected populations, but concerns about safety have limited their use to date.

(1) Prentice RL et al. Nutrition and physical activity and chronic disease prevention. J Natl Cancer Inst 2004, 1276-87.

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Mapping The Future
“State of the research” in: Breast Cancer Knowledge Translation, Health Services, Policy and Ethics
Prepared by: Dr. Eva Grunfeld Director, Health Services and Outcomes Research, Cancer Care Nova Scotia, Halifax, NS and Dr. Lisa Schwartz Associate Professor, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON January 2008 Breast Cancer and Policy:
• Resource allocation: • Waiting times: 50% had 34+ days from diagnosis to surgery (Nancy Mayo) • Organization and delivery gaps and competition • Impact of fee-for-service mammography programs (Heather Bryant) • More needs to be done to organize and inform better access to care. • Gaps in services for patients with advanced breast cancer. • The ethics of breast cancer funding (e.g., for profit organizations).

Disparities and the Social Determinants of Health:
• Continued concerns about disparities in access and outcome related to: • Race and ethnicity • Geographic location (Kevin Gorey; Nicole Hébert-Croteau) • Socio-economic status (Jane Angus) • Women with cognitive disabilities • First Nations communities. • Variation in rate of mastectomies across Ontario for women with DCIS (Eileen Rakovitch) • Global health disparities and breast cancer care in limited resource countries • Advocacy • The ethics of breast cancer advocacy and relationships with pharmaceutical industry (Sharon Batt). Costs and losses to women with breast cancer

Health Technologies Assessment (HTA):
• Health technology assessment and evaluation of treatment options (cost-effectiveness, quality of life; e.g. of breast conserving therapy and of adjuvant therapy; DCIS treatment. • Herceptin use and drug funding (Timothy Whelan) • Mammography: population-based study outcomes; value in surveillance (Larry Paszat; Jacques Brisson) • Radiation treatment schedules; effectiveness of accelerated partial irradiation (Timothy Whelan) • Mammography surveillance after breast reconstruction (Philip Barnsley, Eva Grunfeld, Larry Paszat)

Public Health:
• Value of Public health in screening and education; communicating dietary prevention (C. Rand). • Impact of environmental contaminants • Communication of public health messages

Genetics:
• Genetic testing (and privacy; heritability and choice) • Screening behaviours of family members (Anna Chiarelli)

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• Genetic patenting • Special initiative of CIHR Institute of Genetics and Institute of Health Services and Policy Research on genetic testing • Goals of the INterdisciplinary HEalth Research International Team on BReast CAncer susceptibility (INHERIT BRCAs): (a) To estimate the prevalence and penetrance of BRCA1 and BRCA2 mutations and their deleterious impact upon different populations (b) To pinpoint novel breast cancer susceptibility loci (c) To assess the efficacy of clinical interventions (d) To address changes in quality of life and health-related behaviour from the decision to undergo genetics testing and during follow-up (e) To evaluate legal, social and ethical implications (f) To promote professional and public education by facilitating the transfer of research findings to clinical practice and informing policy makers. The lessons learned by the INHERIT research team and future challenges are presented in Avard et al. in: Partnering in oncogenetic research-the INHERIT BRCAs experience: opportunities and challenges. Fam Cancer. 2006;5(1):3-13. • Impact of health based social movements on policy, access and research

Health Services:
Prevention and prevention strategies: • Cost-effectiveness (Anna Chiarelli); preferences; uptake; fee-for-service (Heather Bryant) • Diet and lifestyles • Abortion and breast cancer link Diagnosis and Screening: • Screening and mammography: how it is organized and how it is changing • Re-screening behaviour and age link (Marcia Johnson) • Role of ultrasonography • Over-diagnosis • Ductal Carcinoma In Situ screening, diagnosis and follow-up (Eileen Rakovitch) • Addressing delay between mammography and diagnosis (Gregory Hislop) • Impact of direct to consumer marketing of screening • Patient preferences for screening • MRIs (Martin Yaffe) Treatment (surgery, radiotherapy, chemotherapy): • Guideline adherence and standards of care (Steve Latosinsky) • Value of multidisciplinary care in best practice • Primary care breast cancer treatment (Eva Grunfeld) • Complementary therapies: attitudes regarding integration (Lynda Balneaves); reasons for access (Moira Stewart); therapeutics (Linda Carlson) • Treatment costs to patients and families (Elizabeth Maunsell) • On-line care delivery projects (David Wiljer) • Guidelines on associated spinal fracture monitoring (C. Whyne) • Adjuvant systemic therapy (Mark Levine, Kathy Pritchard, Paul Goss, M. Brunell) • Adjuvant radiation therapy (Timothy Whelan, Ivo Olivotto) Survivorship: • Associated and long-term health of survivors (Eva Grunfeld; Elizabeth Maunsell; Larry Paszat, Pamela Goodwin). • Transition to primary care (Eva Grunfeld) • Follow up strategies and patterns of care (Eva Grunfeld) • Value of exercise following treatment (Susan Harris, Roanne Segal) • Relationship between exercise and diet (weight control) on breast cancer outcomes (Roanne Segal, Kerry Courneya, Pamela Goodwin) • Stress reduction techniques (Linda Carlson) • Treatment of insomnia (Josee Savard) • Psychosocial functioning (Mary Jane Esplen) • NCIC/CCS identifying survivorship as one of the priority areas for development.

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Mapping The Future
End-of-life care: • Quality indicators of end-of-life care (Eva Grunfeld) • Access to and utilization of supportive care (Ross Gray) • Palliative and end-of-life care indicators (Eva Grunfeld) • Costs of end of life care and family caregiver burden (Eva Grunfeld)

Qualitative Studies: • Experience of members of First Nations (Roanne Thomas-McLean; Jennifer Poudrier) • Informal careers: informational needs (Eva Grunfeld) • Impact on families including costs of care and wage loss (Elizabeth Maunsell) • Involving users in service planning • Communication (Tom Hack)

Research ethics:
• Tissue banking (Lisa Schwartz, Ontario Institute for Cancer Research) • Patient preferences for participation in research • Access to personal health information for research; reliability (Elaine Wai) • Informing participants of findings and list- or blog-mining

Notes: The term “user” tends to be preferred over the term “patient” by researchers in these fields; Names of CBCRA-funded researchers are indicated in parenthesis

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State of the research” in: Breast Cancer Molecular Biology and Signal Transduction
Prepared by: Dr. John Hassell Professor, Department of Biology, McMaster University, Hamilton, ON and Dr. Jim Woodgett Senior Investigator, Director of Research, Samuel Lunenfeld Research Institute, Toronto, ON March 2008 Progress and Opportunities:
1. Emerging role of breast cancer stem cells in cancer initiation, progression and metastatic potential, and the implication of the existence of these cells for treatment. Are we targeting the right cells and judging clinical success by the right criteria? 2. Identification of predictive genes, miRNA and protein signatures and biomarkers of breast cancer progression (metastasis) and treatment. Based on this knowledge, there will be considerable development and validation of new predictive tests. 3. Key signaling pathways dysregulated in breast tumors have been identified. The emerging use of high-content screens to identify synthetic lethal combinations of therapies selective for tumour cells with defined activation of pathways offers the promise of tailored and less toxic therapies. 4. We now recognize the importance of breast tumor heterogeneity and its implications for treatment regimens. This is leading to the development of sophisticated animal models that reflect the stratification of human disease and considers the importance of processes such as epithelial to mesenchymal transitions (EMT) in disease etiology. 5. High throughput datasets of protein expression coupled with bioinformatics analysis is leading to identification of novel therapeutics and therapeutic/diagnostic combinations based on intelligent targeting of pathways and processes dysregulated in breast cancer.

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Mapping The Future
“State of the research” in: Molecular Pathology
Prepared by Dr. David Huntsman Associate Professor, Department of Pathology and Laboratory Medicine University of British Columbia, Vancouver, BC Updated March 2008
Molecular profiling of breast cancer (biological, prognostic and predictive): How do we move toward refining the current classification (basal, luminal, Her-2, etc.)? Predictive classifiers: Can we leverage our clinical trials successes into international leadership in predictive oncology? How can we move toward cutting edge research that will change the way the disease is currently being managed? Surrogate markers for patient response: Primary culture from breast cancers, circulating tumour cells etc. Are these the future of pathology? Pharmacogenomics (germline determinants of patient response): Single SNP versus whole genome analysis. Molecular pathology meets epidemiology: Moving beyond generic cancer risk factors by bringing molecular classifiers into classic and genetic epidemiology study design and analysis. Different subtypes of breast cancer could have different etiologies and risk factors, and molecular pathology needs to be incorporated into epidemiologic studies. Such studies without pathology subtyping are likely to become too naive to be useful in the future. Pathology meets diagnostic imaging: The development of a coordinated approach for the analysis and validation of high resolution images. Proteomics is an emerging technology and it will be some time before the technology is easy to use. Clinical deployment of biomarkers: improving the delivery of standard biomarkers, incorporating new biomarkers into standard practice, developing new strategies for integrating multiple pathology data types (from standard microscopy to gene chips) into a usable reporting structure for treatment decisions. Current barriers include lack of training in this area, insufficient knowledge translation and inadequate policies. New technologies: can a risk adverse community lead? The pathology community is not engaged enough in research, although this is a unique and exciting time where pathology could play a major role in cancer research. Without national collaboration will we have the scale to produce meaningful research? If new research identifies new subtypes of breast cancer to be different diseases, then inter-institutional collaborations will be needed to generate cohorts of subtypes with reasonable size.

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“State of the research” in: Breast Cancer Psychosocial Oncology
Prepared by: Dr. Tom Hack Associate Professor, St Boniface Research Centre, Winnipeg, MB and Dr. Mary Jane Esplen Head, Program of Psychosocial and Psychotherapy Research in Cancer Genetics Toronto General Research Institute, Toronto, ON January 2008
• The proliferation of treatments for breast cancer over the past decade has made it more challenging for women diagnosed with early stage disease to decide on their treatment. The Internet has enhanced a patient’s ability to access relevant illness and treatment information. This mass of available information includes erroneous facts, making it challenging for some women to get accurate information. Evidence-based decision aids and preparatory information packages are on the rise to help women become better informed treatment consumers. • Only in the past few years has the extent of arm morbidity following breast cancer surgery and nodal dissection been systematically documented. These studies have demonstrated that morbidity is common and persistent. Sentinel node biopsy may help to reduce this morbidity. • The clinical practice of psychosocial oncology has expanded in cancer centres across the country, as distress screening has documented a need for supportive counseling through-out the illness trajectory. Not all centres, however, are equipped for adequate screening or yet incorporate evidence-based psychosocial counseling. • The Human Genome Project has resulted in opportunities for identification of individuals and families at high risk for cancer. Genetic counseling and testing is a particular area of growth, both in terms of service and research. While genetic counseling services are well-established in most centres, there continues to be a need for the development and testing of psychological approaches and decisional aids to assist individuals at risk for cancer comprehend and manage their cancer risk. • Many promising interventions have been developed over the past few years (e.g., distress screening, behavioral insomnia remedies, group psychotherapies and psychoeducational programs, exercise regimens, decision aids), and the renewed interest in knowledge translation has sparked concern that promising psychosocial interventions are not reaching eligible patients. • The psychosocial needs of minority breast cancer populations (e.g. young women; women from rural settings; cultural groups; those seeking complimentary therapies) in Canada are not well understood, and targeted services based on solid research findings are lacking. • There are some emerging findings on interventions geared towards families and couples, however, there continues to be a lack of resources and integration of empirically-based services in this area. • While there are currently evidence-based programs and interventions to provide general psychosocial support to patients, there are areas requiring further research, including specialized treatments to address alterations in body image and impact on sexual functioning.

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Mapping The Future
“State of the research” in: Breast Cancer Treatment and Clinical Trials
Prepared by: Dr. André Robidoux Professor, Comprehensive Breast Cancer Research Centre, CHUM- Hôtel-Dieu, Montreal, QC January 2008 Targeted Therapy
• Dual inhibition of HER2 pathway in neoadjuvant and adjuvant therapy of breast cancer • Role of partial breast irradiation compared to conventional whole breast irradiation in stage 0, I or II breast cancer • Role of Trastuzumab given concomitantly with radiation therapy compared radiation therapy alone for women with HER2 positive ductal carcinoma in situ • Assessment of clinical cancer tests trial assigning individualized options for treatment of breast cancer

Endocrine Therapy of Breast Cancer

• Complete blockade of the estrogen receptor pathway and predictive biomarkers of response to endocrine therapy • Optimal role and duration of aromatase inhibitors in adjuvant therapy of breast cancer • Role of the pure anti-estrogens ER downregulators in combination with aromatase inhibitors in neoadjuvant and adjuvant therapy of breast cancer • Role of ovarian suppression with tamoxifen in the adjuvant therapy of breast cancer • What are the genetic markers of endocrine response and their role in the prediction of response to a combination of chemo therapy and endocrine therapy in hormone receptor positive patients

Multiple Target Therapy
• Targeted therapy • Tailored therapy • Predictive biomarkers of endocrine therapy • Complete blockade of HER2 and estrogen receptor pathway • Angiogenesis inhibition in breast cancer: Role of Bevacizumab • Dual tyrosine kinase inhibitors • Combined endocrine therapy • Optimal duration of aromatase inhibitors • Role of chemotherapy following mastectomy for isolated breast recurrence • Optimization of neoadjuvant therapy to increase pathological complete response and identification of predictors of high likelihood for pathologic response in the breast and nodes

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“State of the research” in: Breast Cancer Tumour Microenvironment and Metastasis
Prepared by: Dr. Shoukat Dedhar Senior Scientist, Cancer Genetics and Developmental Biology, BC Cancer Research Centre, Vancouver, BC January 2008
1. Historically, research has been focused on “individual breast tumour cells” • Identification of oncogenes and tumour suppressor genes • Generation of novel reagents that target breast cancer cell; e.g., Herceptin, Tamoxifen, aromatase inhibitors Recently: Research focus is on the tumour as “an organ” • Tumour is not a mass of autonomous cells • There are many interdependent cell types • There are bidirectional and dynamic interactions with the stroma • Tumour and its stroma may co-evolve during the initiation and progression of breast cancer

2. “Stroma” has several components: • Cellular: Resident: fibroblasts, endothelial cells, nerve cells, muscle cells Infiltrating: inflammatory cells, immune cells, endothelial cell precursors • Structural: Extracellular Matrix components • Molecular: Cytokines, growth factors, proteases, ECM fragments, Stroma are “Organ Specific” and may have significant impact on the establishment and growth of organ-specific breast cancer metastases 3. Microenvironment influences breast tumour growth at all stages a) Pre-malignant and early cancer: • Stroma may facilitate growth of pre-malignant cells and the switch to malignancy (e.g., the angiogenic switch) b) Tumour progression and Metastasis: • Inflammation can modulate progression. • Proteases and cytokines mediate invasion, angiogenesis and metastasis • Organ specific metastasis is mediated by cytokines, growth factors and ECM proteins 4. Tumour microenvironment can be a novel target for therapeutics a) Stroma may contribute to morbidity and drug resistance b) Tumour cells need stromal components for growth and metastasis: stromal targeting agents: Velcade, Avastin c) Stromal cells show genetic and epigenetic changes at various stages of cancer: potential targets d) Tumour-reactive stroma: What are the alterations? Can it be targeted? 5. Drug discovery of breast cancer is carried out using models of primary breast cancer. Models of metastatic/systemic breast cancer should be developed and used for more effective treatment of breast cancer

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Mapping The Future
Summary of Canadian Breast Cancer Research System Gaps
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken a number of data gathering activities to identify what a range of stakeholders believe to be the most important breast cancer research priorities at this time. For research to be successful, the system1 that underlies it needs to provide the necessary resources and supports. Hence, the data gathering undertaken by CBCRA also sought to identify the systemic changes required in order for the national breast cancer research framework to be implemented successfully.

2- Methodology

Stakeholders were asked to identify what they saw as being the key gaps and barriers to the conduct of successful research moving forward. These questions were posed in different ways to the different stakeholder groups, depending on the nature of the data gathering exercise. Specifically: Researchers2: • At the CBCRA’s SRAW workshop, in both discipline specific as well as interdisciplinary groups, researchers identified system gaps and barriers • At the NCIC Summit, during the interviews and the in-person discussions, gaps and barriers were identified • A Focus Group was held by CBCRA in November, 2007 specifically to address this question. 14 senior investigators, across the research spectrum and from across the country attended a dinner meeting chaired by Dr Martin Yaffe to identify research system gaps and areas where Canada is internationally competitive in breast cancer research. System gaps identified were classified into four categories: funding, infrastructure, capacity and relationships between funders and researchers Survivors: • Input was received via two open ended questions: one asking for advice with respect to breast cancer research and research funding and the second being the final request question requesting any additional advice/input Policy Influencers: • A specific question was included in the interview guide Funders: • The results from the dedicated focus group of researchers described above were tested in the on-line survey • A specific question was also included in the key informant interview guide.

3- Discussion

The attached table summarizes the major gaps identified by stakeholder group. As would be expected, the researchers – as a group – identified the most gaps given their intimate knowledge of the system and what is - and is not - currently working. The overall category with the most mentions is funding. There appear to be a number of specific types of funding that researchers particularly would welcome, with some of these gaps also being supported by other stakeholders: for example, greater equity in funding across the continuum, a gap also identified by funders and policy makers. Other areas of convergence between the different groups surveyed, include the building of researcher capacity, the funding of multi-disciplinary/team grants and the translation of research findings into practice. While policy influencers were adamant about the need to find ways to ‘formalize and regularize’ interaction between researchers, policy influencers and other stakeholders, two other gaps attracted a great deal of comment, notably: • The ability to access tumour banks • The issue of knowledge translation and finding ways to ensure research findings are taken into account when developing, and improving, policy and practice.

It is interesting to observe that in some of the international studies, similar types of system issues were also documented. For example, in the UK study, three ‘generic needs’ were identified related to infrastructure and funding.
1

Definition used for research system: The funding mechanisms, infrastructure requirements, key processes (such as planning and surveillance) and human resources to support a world class research enterprise See Canadian Breast Cancer Researcher Priorities Summary for more details on the CBCRA and NCIC workshops

2

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Canadian Research System Gap Analysis
The table below captures the key gaps identified through the data gathering process clustered under headings to enable easy access to the key messages: Gaps Researchers Research Capacity • Current career structure for researchers creates limitations x • Build capacity to lead and participate in multi-disciplinary teams x Research Infrastructure • Tumour Banks: banking and access to patient samples, x (including metastatic tissue) and the clinical data associated with them; access to tissue microarrays;– Issue of lack of funding for oversight and management of tumour banks. Need for more targeted tumour banks •Application of clinical trial infrastructure to new questions/issues x Funding • Funding for international networks x • Funding for long term studies, including cohort studies x • Need for funding of team/multidisciplinary grants x • Salary support to allow clinician scientists to have protected x research time • Funding for research on existing cohorts x • Raise current funding ceilings (especially for epidemiology and x prevention grants) • Lower the pay line/cut-off line on Operating Grants x (i.e. to increase success rate) • Create more equity in funding across the breast cancer x research continuum • Fund mechanisms for bringing people together to x collaborate/discuss issues, including regular interaction of researchers, policy makers and stakeholders • Need for more creative funding approaches x Planning and Coordination • Need for new ways of doing research: of scientists interacting more and applying their knowledge/ techniques to real world issues Knowledge Exchange/Transfer • Translation of breast cancer findings to other disease sites • Gaps in knowledge as to the best way to conduct knowledge translation x • Translation of research findings into practice, including to x psychosocial area and publicizing of research results • ‘Regularization and formalization’ of interaction among policy influencers, researchers and stakeholders Communication • Weaknesses across the system and with the outside world Structure • Need for better alignment across existing initiatives and across provincial jurisdictions • Need for better linkage with global agenda/more international networks needed Other • Limited capacity across the system for change x • Studies in specific underserved populations x • Identification of appropriate accountability mechanisms x Survivors Policy Influencers x x Funders x x

x x x x

x x x

x

x

x x x x x

x x

x x x x

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Summary of Internationally Identified Breast Cancer Research Priorities
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken a number of data gathering activities, including reviewing the literature to identify recent attempts outside of Canada to establish breast cancer research priorities.

2- Overview of Initiatives

Four initiatives were identified as having taken place in the past 18-24 months and are described below. The attached table presents a mapping against the Common Scientific Outline categories of the results of three of these consultations since the full results of the fourth have yet to be released. (I) The Top Ten International Priorities – sometimes referred to as the St Gallen Priorities (results published by Mitch Dowsett et al., Breast Cancer Research, 2007, 9:R81) This is the product of an international effort organized by Professor Mitch Dowsett (Royal Marsden Hospital, London UK) in 2006 to find consensus as to the key areas of translational research1 among the many clinicians and researchers around the world undertaking innovative work in breast cancer. The overall aim of the Top Ten Programme was described formally as to ‘identify, through international consensus, the ten most important research priorities for the breast cancer community in the area of translational research, and thereby encourage the targeting of the best research to questions of the highest priority’ (Report, pg 4). The programme was designed to assimilate the opinions and ideas from as wide an international group of concerned parties from the research community as possible. Following an informative, interactive process of amalgamation and feedback of ideas on current and prospective research activities, findings were disseminated to both the participants themselves and to the wider breast cancer community. Findings were formally announced at the St Gallen Conference in March, 2007. Methodology: • The program was implemented, steered and informed by an advisory group of six internationally recognised experts in the breast cancer field, led by Prof. Dowsett • In the programme, which ran from October 2006 to March 2007, the views and feedback from the global breast cancer research community on the ten most important current research topics/questions in translational breast cancer research were elicited via email and via an interactive website • Potential participants were identified from a database of more than 4,000 participants to the 2005 San Antonio Breast Cancer Symposium and the 2005 St Gallen Consensus Meeting on Primary Therapy of Early Breast Cancer • Over 600 registrants to the website, from a total of 62 countries around the world, contributed ideas for candidate research topics/questions, of whom 420 participated in a voting procedure to select and rank the best ten from a total of 70 principal candidate topics/questions • Registrants who voted comprised clinicians (53%); academics (24%); research scientists (20%); and pathologists (3%), and the major world regions were represented in the registrants’/ voters’ countries of origin: North America (USA and Canada: 48%); Europe (32%); Asia (10%); Oceania (5%); South America (3%); Central America (1%); Africa (<1%); Latin America (0%) • Participants who registered to vote were each invited to rank their ten selected research topics (from the list of 70) in order of priority, and these votes were then used to obtain a final weighted total points score for all the topics/questions, from all voters • Votes were recorded from 420 voters (2,520 votes) from 48 countries, with 48% of voters coming from North America. Half of the voters identified themselves as clinicians, with the remainder being academics, research scientists or pathologists. Votes were counted and allocated scores. The scores were summed for each of the topics to create the consensus scoring • The programme culminated in the identification of the ten most important areas of highest research priority, selected from the list of 70 specific candidate topics.

Translational research is understood for the purposes of this report as endeavours to apply the results of laboratory studies to advance the treatment of breast cancer
1

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Results: The top ten priorities in translational research in breast cancer were identified as follows: #1- Molecular Signatures #2- Optimal Chemotherapy #3- DCIS To Progression #4- Stem Cell #5- Triple Negative BC #6- Computer Systems • Identification of molecular signatures to select patients who could be spared chemotherapy. • Identify molecular features which indicate the optimal chemotherapy regimen (e.g., combination or sequential, anthracyclin or not, taxane or not). • Determine the factors in DCIS and/or ADH leading to progression into invasive carcinoma. • Determine the role of stem cells in breast cancer development, progression and treatment sensitivity. • Identify response/resistance mechanisms and thereby therapeutic targets for triple negative breast cancer. • Develop a system (computer etc) that will integrate all the information so far gathered about breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer. • Identifying which low risk patients require NO adjuvant therapy. • Determine if other growth factor pathways are important targets for therapy such as EGFR, IGFR, Notch, Hedeghog, Wnt and other angiogenic pathways. • Investigate which gene mutations in a cancer lead to metastases. • Identify drugable targets that can be developed/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance.

#7- No Adjuvant Therapy #8- Pathways #9- Gene Mutations Responsible For Metastatis #10- Endocrine Resistance

For additional information, see http://www.toptenresearch.org/index.html - The full text article is at: http://breast-cancer-research.com/content/9/6/R81 (II) UK Breast Cancer Research Recommendations based on a Gap Analysis: (results published by A. Thompson et al., Breast Cancer Research, 2008, 10: R26). In 2006/7, a gap analysis was conducted among 56 Breast Cancer Campaign grant holders and other prominent UK breast cancer researchers to determine which areas of breast cancer research, if addressed, could produce the greatest impact on patients. Methodology: • In November 2006, the research charity Breast Cancer Campaign convened a panel of leading breast cancer researchers, as an initial event, to debate and identify the limitations of current research into the pathophysiology, detection, treatment, prevention and psychosocial aspects of breast cancer. The choice of participants was based on publication record, research activity and clinical stature, and selected using a database of researchers developed since the inception of the Breast Cancer Campaign in 1988. • Seven key research areas were selected for review taking into account UK, European and USA themes in scientific meetings focused on breast cancer and UK Government analyses of research funding streams • Prior to the event, participants were asked to review relevant literature and construct short presentations summarising their areas of expertise and identifying potential research gaps. • On 2 November 2006 a one-day meeting was convened in London, UK. In the initial subgroup sessions, each participant gave a presentation to their group. Issues explored during the gap analysis were structured around the following questions: What do we already know; What are the gaps in our knowledge; What are the problems that need to be overcome to fill these gaps; What are the translational implications?

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• This iterative process continued as evidence-based expert opinion from the one-day meeting was cross-referenced, shaped and developed during subsequent weeks. Each group formulated a summary paper for their research area, incorporating key references, which was then circulated to the participants of the respective groups for further refinement. These seven themes were collated finally into a unified position paper.

Results: Gaps were identified in all seven themes. General barriers to progress identified included lack of financial and practical resources (need for improved preclinical models and access to appropriate and annotated clinical material), and poor collaboration between disciplines. The table below summarizes the gaps and recommendations in each of the seven themes. Theme (1) Genetics of breast cancer Gaps • Detailed understanding of the actions of BRCA1 and BRCA2 • Knowledge of large scale genetic rearrange ments in tumour cells • The important variants, effects and interactions of low penetrance genes • Further identification of point mutations and epigenetic changes • The relationship of signalling pathways to ductal and acinar breast architecture • The need for widespread use of more appropriate in vivo and culture methods • The importance of stroma and other cell types, cell adhesion and the extracellular matrix. • Understanding stem cells • Understanding mechanisms of epithelial apoptosis • Understanding how pregnancy and functional differentiation in the breast protect against breast cancer • Understanding the complexities of breast cancer intracellular signal transduction path ways, paracrine pathways, invasion, angiogen esis and metastasis including relevance of these mechanisms to clinical progression • Whether there are inherently migratory stem cells or is metastatic capacity acquired • Understanding time-dependent progression events, notably dormancy and reactivation of micrometastasis, at particular secondary sites • Understanding the emerging relationship between therapeutic resistance and metastasis • Causative factors underlying recurrence of DCIS or progression to invasive disease • Understanding interplay between stroma, myo epithelial and epithelial components during Recommendations • Encourage development of research tech- niques to allow integrated analysis of sequence level, epigenetic and large-scale somatic changes • Engage in national initiatives for activities such as high-throughput re-sequencing and UK controls • Encourage research involving intermediate phenotypes • Develop three-dimensional cell culture models, containing multiple cell types, that reflect the tissue architecture of the normal and diseased breast • Generate better animal models, in which gene expression can be manipulated in each cell type of the mammary gland and will not be altered by transdifferentiation or dedifferentiation • Gain a greater understanding of the genetic changes that occur within atypias and DCIS • Improve preclinical models, research reagents and technologies (including imaging) • Enhance access to appropriate clinical material, notably matched samples during progression and sequential samples obtained during treatments including new agents • Consider the genetic signature/specific genetic lesions when exploring progression biology and designing clinical trials

(2) Initiation of breast cancer

(3) Progression of breast cancer

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early progression and interplay between tumour cells, stroma and immune system in metastasis • The need for improved preclinical models of the influences of the microenvironment, site specific metastasis and dormancy • In vivo imaging technologies to study the dynamics of metastasis and relate this to signalling mechanisms, as well as means to manipulate these mechanisms to evaluate targeting potential (4) Therapies and Targets within breast cancer • There is an incomplete understanding of the biology of breast cancer including the effects of compensatory signalling pathways responsible for drug resistance • We cannot determine who goes on to develop metastatic disease or drug resistant cancers • Individualization of therapies could be improved • The optimal duration of therapy is unclear for many drugs • Build resources through high-quality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits • Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression • Increase research efforts into the role of the tumour microenvironment and the immune system in the development and treatment of breast cancer • Design innovative trials and translational studies to develop and evaluate predictive and prognostic markers • Develop close multidisciplinary collaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome • Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer • Improve breast cancer risk prediction models • Encourage transdisciplinary input to prevention trials (e.g., geneticists, epidemiologists, nutritionists, psychologists and clinicians) to study the psychosocial, compliance and genetic aspects of prevention • Establish the potential benefits of diet and exercise post diagnosis on outcome and quality of life for breast cancer patients

(5) Disease markers of breast cancer

• Optimum protocols for pathological assessment of DCIS and sentinel lymph nodes • Combining clinical, radiological, pathological and genomic data in trial populations • No robust validated markers have yet been developed for predicting response to chemo therapy or radiotherapy • There is no consensus for markers indicative of resistance to therapy • There is a need for improved prognostic indices based on disease markers • The long term effects of chemoprevention of ER positive cancers are unknown • Prevention of ER-negative cancers remains a challenge • There is a need to understand the target cell for breast cancer prevention • Need to improve current risk prediction models by including modifiable risk factors • The health beliefs of high-risk and population risk women require exploration • The effects of breast screening out with currently targeted groups is not known • To define deliverable diet and exercise interventions for the primary and secondary prevention of breast cancer. • To elucidate the mechanism for breast cancer prevention with energy restriction

(6) Prevention of breast cancer

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(7) Psychosocial aspects of breast cancer • Evaluation of decision aids for risk management and choice of preventative surgery amongst high risk women. • Ways of effectively communicating information and aiding patient treatment decision making • Defining patient experiences in early, chronic and end stage breast cancer • Limited research into co-morbidities amongst breast cancer patients • Experiences of ethnic minority populations and older women • The need to develop and evaluate appropriate psychosocial interventions for high risk women and those diagnosed as having breast cancer • Use of psychological theories in behaviour change that could enhance compliance to lifestyle and chemoprevention trials. • Develop and rigorously evaluate appropriate psychosocial interventions • Encourage cross-specialty collaboration to incorporate psychosocial issues and psychological theory (e.g., psychological theories in relation to behaviour change are relevant to those researching prevention with diet and exercise or chemoprevention) • Ensure research gives greater attention to all stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included

The full text article is at http://breast-cancer-research.com/content/10/2/R26 (III) The CBCRP Priorities: Identifying Gaps in Breast Cancer Research Addressing Disparities and the Roles of the Physical and Social Environment – April 2008 For the last four years, the California Breast Cancer Research Program (CBCRP), the largest state-funded breast cancer research program in the United States, has convened over 300 leading experts and advocates from throughout California and across the nation, as a first step in a five-year effort to find answers that will push breast cancer research forward. The goals of the CBCRP in identifying new research areas and developing new initiatives are: • To initiate research that will point to actions that can be taken to reduce the burden of breast cancer • To conduct research that will provide recommendations to advocacy organizations and policy makers for evidence- based change • To stimulate more research into the environment-breast cancer connection and the reasons why some groups of women bear a greater burden of breast cancer

Environment is defined in this study as all of the non-genetic factors that might lead to breast cancer that are also largely outside an individual’s control. The following areas/initiatives were identified and research funding was announced in April, 2008

#1 Environmental Links to Breast Cancer
Chemicals Policy and Breast Cancer California is pursuing the Green Chemistry Initiative to develop a new statewide policy on chemicals to assure that chemicals used and manufactured in the state are healthy for humans and sustainable for the environment. The CBCRP will bring breast cancer issues to the forefront in this process by funding an expert working group to consider the biological pathways through which chemicals contribute to breast cancer and identify the best currently available chemical safety tests. Estimated $200,000 Make Chemicals Testing Relevant to Breast Cancer With advances in our understanding of breast cancer and technology, there are new tests that could give a faster, more accurate or costeffective determination of the role of individual chemicals in breast cancer. Researchers are invited to submit proposals to develop and evaluate the most comprehensive battery of accurate, reliable, rapid, and cost-effective existing tests that can be performed on chemicals to see if they cause changes in the body that can contribute to breast cancer. Estimated $5,000,000

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Environmental Causes of Breast Cancer Across Generations Researchers funded under this initiative will test whether exposure to certain chemicals during the course of a woman’s pregnancy may increase the risk of breast cancer for the child later in life. The researchers will carry out long-term follow-up to discover more about how chemical exposures at various stages of life contribute to a woman developing breast cancer using pre-existing samples that were collected 40 years ago. Estimated $5,000,000

#2 Ethnic, Racial and Other Disparities in Breast Cancer Incidence and Survival
An Integrated Approach to Understanding Behavioral, Social, and Physical Environment Factors and Breast Cancer Among Immigrants In general, women come to the U.S. from countries with lower rates of breast cancer than the U.S. rate. The longer they live here, the more their risk rises. Their daughters who are born here are at still higher risk. Researchers will be invited to submit proposals for trans-disciplinary pilot studies to describe the changes in behavior, social and physical environment that may cause the dramatic increase in breast cancer risk that occurs as people immigrate to and remain in California. Estimated $1,680,000 Demographic Questions for California Breast Cancer Research Measures of population characteristics in health research are rarely standardized. Demographic questions are both necessary and useful to conceptualize and understand population group differences in health status, access to health care and survival/mortality. Researchers will be invited to submit their qualifications for convening an expert panel to identify the demographic measures that will best allow better predictions of health behaviors and outcomes among diverse populations. Estimated $400,000 Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival When breast tumors are diagnosed, they are often classified by stage. In general, the lower the stage of a tumor when a woman is diagnosed, the more likely she is to survive. However, women from some racial and ethnic groups are less likely to survive than women from other racial and ethnic groups diagnosed at the same stage. The CBCRP is funding a $300,000 feasibility study to determine whether the data from existing California studies can be combined in order to provide a more complete, birds-eye picture of why people from different racial and ethnic groups, who are with diagnosed with breast cancer at the same stage, have different survival outcomes. If it proves feasible to combine the studies and answer meaningful research questions, the CBCRP will provide $3.9 million for such a study.

#3 Intersections of Multiple Factors That Impact Breast Cancer
New Statistical Models to Address Disease Complexity Environmental exposures—such as exposure to toxic chemicals or to radiation—can contribute to breast cancer. So can social exposures, such as living with the stress of racism or in a neighborhood where it is unsafe to go outside and exercise. Researchers will be invited to submit proposals to develop new statistical analysis strategies, using existing statistical methods, to better address how multiple environmental and social exposures across a woman’s full life course may interact to affect her breast cancer risk. They will test their models on breast cancer data, which may lead to new ideas on breast cancer causation. Estimated $1,100,000 Biological/Ecological Models of Breast Cancer Causation and Prevention Experts will be invited to submit their qualifications for convening a diverse, interdisciplinary panel that includes social scientists, environmental scientists, and experts on disparities. This interdisciplinary project will develop a complexity-theory based model of breast cancer causation that takes into account many events over time on many levels. The resulting model will move breast cancer research away from a focus on a limited number of possible causes of breast cancer considered in isolation from each other to considering a web of relationships among many variables that contribute to causing or preventing breast cancer over the life course. Estimated $320,000 Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women The most promising of two pilot studies will be considered for full study funding to explore environmental exposures and breast cancer among a large, diverse cohort of women. The statewide California Teachers Study has several universities collaborating on a study investigating over 133,000 women who periodically provide information about their lives and biological samples (such as blood) to the study’s researchers. Kaiser Permanente Northern California has initiated a study with over 200,000 women named the Research Program on Genes, Environment and Health (RPGEH) examining genetics, lifestyle factors, environmental exposures and health status. Two pilot projects will be funded at $100,000 each. Funding for a full study would be $5-6 million For additional information, see http://www.cabreastcancer.org/media/pr/041008.php

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(IV) The US Collaborative Summit on Breast Cancer Research – Nov 2007: Leesburg, Virginia – The purpose of the Breast Cancer Summit was to define new research funding paradigms that would optimize opportunities and reduce barriers and waste toward the goal of ending breast cancer. The 100 invited participants included funders, advocates, govt agencies and scientists from academic institutions and the pharma industry. Methodology: The approach included a few didactic lectures, followed by a panel of experts and a Q&A session to help set the stage so that all participants were informed about the current landscape and opportunities. Then, participants were divided into small group round tables where barriers to progress and key issues were discussed. Overnight, the organizing members (Avon, ACS, Komen, NCI, etc) met and looked over all the roundtable discussions. On the second day, in plenary, the outcomes of the roundtables were discussed and three priorities agreed. Results: The following action items were developed by consensus: 1. A National Breast Cancer Planning Committee was formed by key funding agencies, including the Avon Foundation, The Breast Cancer Research Foundation, Susan G Komen for the Cure and others – to meet periodically to review the breast cancer research landscape and national agenda in breast cancer 2. Information on grant awards is to be placed into common database by the key funding agencies to help identify gaps, opportunities and overlaps. 3. A report to the public will be developed by key funding agencies on how donations are expended in the breast cancer field. The public will be able to go online and search where the funds are going and understand how the non-profit organizations are working together.

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)
1.1 Normal Functioning 1.2 Cancer Initiation: Alterations in Chromosomes 1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes 1.4 Cancer progression and metastasis 1.5 Resources and Infrastructure

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
1.5 Access to appropriate and annotated clinical material (Generic needs) 1.2/1.5 Encourage development of research techniques to allow integrated analysis of sequence-level, epigenetic and large-scale somatic changes ( theme #1 Genetics of breast cancer) 1.2/1.5 Engage in national initiatives for activities such as high-throughput Policy Influencers’ re-sequencing and UK controls (theme Perspectives on #1 Genetics of breast cancer)

Initiatives identified by the CBCRP - April 2008

1. Biology *Prevention *Diagnosis *Treatment

1.3 Stem cells (#4 -Determine the role of stem cells in breast cancer development, progression and treatment sensitivity) 1.3 Pathways (#8 - Determine if other growth factor pathways are important targets for therapy such as EGFR, IGFR, Notch, Hedeghog, Wnt and other angiogenic pathways) 1.3 Endocrine resistance (#10 - Identify drugable targets that can be developed/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance ) 1.4 DCIS to progression (#3 - Determine the factors in DCIS and/or ADH leading to progression into invasive carcinoma) 1.4 Gene mutations responsible for metastasis (#9 - Investigate which gene mutations in a cancer lead to metastases) 1.5 Computer system (#6 - Develop a system (computer Code³ will CSO etc) that integrate all the information so far gathered about breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer)

Breast Cancer Research

1.2/1.5 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer) 1.2/1.3/1.4 Gain a greater understanding of the genetic changes that occur within atypias and DCIS (theme #2 Initiation of breast cancer) 1.5 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending toInfluencers’ Policy new agents (theme #3 Progression of breast cancer) Perspectives on 1.4 Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer) 1.5 Build resources through the highquality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer)

Breast Cancer Research

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
1.4 Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer) 1.4 Increase research efforts into the role of the tumour microenvironment and the immune system in the development and treatment of breast cancer Policy Influencers’ (theme #4 Therapies and targets in Perspectives on breast cancer)

Initiatives identified by the CBCRP - April 2008

Breast Cancer Research

2. Etiology *Prevention *Diagnosis

2.1 Exogenous Factors in the Origin and Cause of Cancer 2.2 Endogenous Factors in the Origin and Cause of Cancer 2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors 2.4 Resources and Infrastructure related to etiology

2.4 Computer system (#6 - Develop a system (computer etc) that will integrate all the information so far gathered about breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer)

2.4 Access to appropriate and annotated clinical material (Generic needs #2) 2.4 Cross disciplinary working (Generic needs #3) 2.3/2.4 Encourage development of research techniques to allow integrated analysis of sequence-level, epigenetic and large-scale somatic changes (theme #1 Genetics of breast cancer) Policy Influencers’

2.1/2.2/2.3/2.4 Environmental links to breast cancer *Chemicals Policy and Breast Cancer * Make Chemicals Testing Relevant to Breast Cancer *Environmental Causes of Breast Cancer Across Generations 2.1/2.2/2.3/2.4 Ethnic, racial and other disparities in breast cancer incidence and survival *An Integrated Approach to Understanding, Behavioral, Social and Physical Environment Factors and Breast Cancer Among Immigrants *Demographic Questions for California Breast Cancer Research *Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival 2.4 Intersections of multiple factors that impact breast cancer *New Statistical Models to Address Disease Complexity

CSO Code³

2.3/2.4 Engage in national initiatives Breast Cancer Research for activities such as high-throughput re-sequencing and UK controls (theme #1 Genetics of breast cancer) 2.3/2.4 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer) 2.4 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending to new agents (theme #3 Progression of breast cancer)

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
2.4 Build resources through the highquality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer

Initiatives identified by the CBCRP - April 2008
*Biological/Ecological Models of Breast Cancer Causation and Prevention *Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women

3. Prevention *Prevention *Treatment

3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk 3.2 Nutritional science in cancer prevention 3.3 Chemoprevention 3.4 Vaccines 3.5 Complementary and Alternative Prevention Approaches 3.6 Resources and Infrastructure related to prevention

3.6 Access to appropriate and annotated clinical material (Generic needs #2) Policy Influencers’ needs #3)

Perspectives on Breast Cancer Research 3.6 Cross disciplinary working (Generic

3.1-3.6 Environmental links to breast cancer *Chemicals Policy and Breast Cancer * Make Chemicals Testing Relevant to Breast Cancer *Environmental Causes of Breast Cancer Across Generations 3.1-3.6 Ethnic, racial and other disparities in breast cancer incidence and survival *An Integrated Approach to Understanding, Behavioral, Social and Physical Environment Factors and Breast Cancer Among Immigrants *Demographic Questions for California Breast Cancer Research *Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival

3.6 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending to new agents (theme #3 Progression of breast cancer) 3.6 Build resources through the highquality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment Policy Influencers’ (including neoadjuvant studies), includPerspectives on ing samples of primaryResearch Breast Cancer tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer) 3.1/3.6 Improve risk prevention models (theme #6 Prevention of breast cancer) 3.6 Encourage transdisciplinary input to prevention trials (for example, geneticists, epidemiologists, nutritionists, psychologists and clinicians) to study the psychosocial, compliance and genetic aspects of prevention (theme #6 Prevention of breast cancer)

CSO Code³

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3.1-3.6 Intersections of multiple factors that impact breast cancer *New Statistical Models to Address Disease Complexity *Biological/Ecological Models of Breast Cancer Causation and Prevention *Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women

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International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
3.1/3.6 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer) 4.4 Access to appropriate and annotated clinical material (Generic needs #2) 4.4 Cross disciplinary working (Generic Policy needs #3) Influencers’

Initiatives identified by the CBCRP - April 2008

4.1/4.1 Molecular signatures (#1 Identification of molecular signatures to select patients who could be spared chemotherapy ) 4. Early detection, diagnosis and prognosis *Screening *Treatment *Diagnosis 4.1 Technology development and/or marker discovery 4.2 Technology and/or marker evaluation with respect to fundamental parameters of method 4.3 Technology and/or marker testing in a clinical setting 4.4 Resources and infrastructure related to detection, diagnosis or prognosis 4.1/4.2/4.3 Optimal chemotherapy (#2 - Identify molecular features which indicate the optimal chemotherapy regimen)

Perspectives on Breast Cancer Research 4.4 Encourage development of research
techniques to allow integrated analysis of sequence-level, epigenetic and large-scale somatic changes (theme #1 Genetics of breast cancer) 4.4 Engage in national initiatives for activities such as high-throughput resequencing and UK controls (theme #1 Genetics of breast cancer) 4.4 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer) Policy Influencers’

CSO Code³

4.1 Improve preclinicalResearch Breast Cancer models, research reagents and technologies (including imaging) (theme #3 Progression of breast cancer) 4.4 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending to new agents (theme #3 Progression of breast cancer) 4.1 Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
4.4 Build resources through the highquality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer) 4.1/4.2/4.3/4.4 Design innovative trials and translational studies to develop and Policy Influencers’ prognostic evaluate predictive and Perspectives on markers (theme #5 Disease markers in Breast Cancer Research breast cancer) 4.1/4.2/4.3/4.4 Develop close multidisciplinary collaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome (theme #5 Disease markers in breast cancer) 4.1/4.2/4.3/4.4 Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screendetected to metastatic breast cancer Policy Influencers’ (theme #5 Disease markers in breast Perspectives on cancer) Breast Cancer Research

Initiatives identified by the CBCRP - April 2008

4. Early detection, diagnosis and prognosis (cont.) *Screening *Treatment *Diagnosis

CSO Code³

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International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)
5.1 Localized therapies: discovery and development 5.2 Localized therapies: clinical applications 5.3 Systemic therapies: discovery and development 5.4 Systemic therapies: clinical applications 5.5 Combinations of localized and systemic therapies 5.6 Complementary and alternative treatment approaches 5.7 Resources and infrastructure related to treatment

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
5.7 Access to appropriate and annotated clinical material (Generic needs #2) 5.7 Cross disciplinary working (Generic needs #3) 5.7 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending to new agents (theme #3 Policy of breast cancer) Progression Influencers’

Initiatives identified by the CBCRP - April 2008

5. Treatment *Treatment

5.1/5.3 Triple negative BC (#5 - Identify response/resistance mechanisms and thereby therapeutic targets for triple negative breast cancer) 5.1 No adjuvant therapy (#7 - Identifying which low risk patients require NO adjuvant therapy) 5.3 Endocrine resistance (#10 - Identify drugable targets that can be developed/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance)

Perspectives on Breast genetic signature when 5.3 Consider Cancer Research
exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)

5.7 Build resources through the highquality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer) 5.2/5.4/5.5 Develop methods for easy, Perspectives on reproducible Cancer Research Breast monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer) 5.3 Increase research efforts into the role of the tumour microenvironment and the immune system in the development and treatment of breast cancer (theme #4 Therapies and targets in breast cancer)

Policy Influencers’

CSO Code³

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
5.3/5.4 Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer) 5.1 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention Policy Influencers’ of breast cancer)

Initiatives identified by the CBCRP - April 2008

5. Treatment *Treatment (cont.)

Perspectives on Breast Cancer Research 6.9 Cross disciplinary working (Generic 6. Cancer control, survivorship and outcomes *Supportive care *Palliative care
6.1 Patient care and survivorship issues 6.2 Surveillance 6.3 Behavior 6.4 Cost analyses and health care delivery 6.5 Education and communication 6.6 End-of-life care 6.7 Ethics and confidentiality in cancer research 6.8 Complementary and alternative approaches for supportive care of patients and survivors 6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research needs #3) 6.2 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer) 6.1/6.3/6.5/6.9 Develop and rigorously evaluate appropriate psychosocial interventions (theme #7 Psychosocial aspects of breast cancer) 6.1/6.5/6.9 Encourage cross-specialty Perspectives on collaborations to incorporate Breast Cancer Research psychosocial issues and psychological theory (for example psychological theories in relation to behaviour change are relevant to those researching preventative lifestyles including diet and exercise) (theme #7 Psychosocial aspects of breast cancer)

6.2-6.9 Environmental links to breast cancer *Chemicals Policy and Breast Cancer * Make Chemicals Testing Relevant to Breast Cancer *Environmental Causes of Breast Cancer Across Generations 6.2-6.9 Ethnic, racial and other disparities in breast cancer incidence and survival *An Integrated Approach to Understanding, Behavioral, Social and Physical Environment Factors and Breast Cancer Among Immigrants *Demographic Questions for California Breast Cancer Research *Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival

Policy Influencers’

CSO Code³

National Breast Cancer Research Summit | Results

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Mapping The Future
International Research Priorities, Identified Gaps and Barriers
CSO Category (1) and corresponding Cancer Control
Continuum categories (2)

CSO Code (3)

Top 10 Research Priorities - March 2007

Future research recommendations from UK gap analysis - March 2008
6.1/6.2/6.4/6.5/6.9 Ensure research gives greater attention to all stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included (theme #7 Psychosocial aspects of breast cancer)

Initiatives identified by the CBCRP - April 2008
6.2-6.9 Intersections of multiple factors that impact breast cancer *New Statistical Models to Address Disease Complexity *Biological/Ecological Models of Breast Cancer Causation and Prevention *Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women

6. Cancer control, survivorship and outcomes *Supportive care *Palliative care (cont.)

7. Scientific model systems *Prevention *Diagnosis *Treatment

7.1 Development and characterization of model system 7.2 Applications of model systems 7.3 Resources and infrastructure related to scientific model systems

7.1/7.2 Improve preclinical models Perspectives on (Generic needs #1)

Policy Influencers’

Breast Cancer Research

7.3 Cross-disciplinary working (Generic needs #3) 7.1/7.2 Develop three-dimensional cell culture models, containing multiple cell types, which reflects the tissue architecture of the normal and diseased breast (theme #2 Initiation of breast cancer) 7.1/7.2 Generate better animal models, particularly for ER-positive tumours, Policy Influencers’ in which gene expression can be maPerspectives on nipulated in all cell types of the mammary gland and will not be altered by Breast Cancer Research transdifferentiation or dedifferentiation (theme #2 Initiation of breast cancer)

CSO Code³

(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp) (2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. (3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details

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Mapping The Future
A Listing of Relevant Acronyms and Definitions
ACB Alberta Cancer Board AHFMR Alberta Heritage Foundation for Medical Research BCCA British Columbia Cancer Agency CAPCA Canadian Association of Provincial Cancer Agencies CBCF Canadian Breast Cancer Foundation Cancer Control Continuum The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care. CCMB CancerCare Manitoba CCRA The Canadian Cancer Research Alliance is an alliance of cancer research funding organizations and affiliated partners working together to enhance the overall state of cancer research funding in Canada through improved communication, cooperation and coordination. CCRA started within the context of the Canadian Strategy for Cancer Control (CSCC), which represents a very broad partnership of Canada’s leading cancer organizations that has worked since the late 1990s to create an inclusive, integrated and comprehensive strategy to address the increasing number of new cancer cases and cancer deaths in Canada. CCS Canadian Cancer Society CIHR Canadian Institutes of Health Research CPAC The Canadian Partnership Against Cancer is a relatively new independent corporation charged with accelerating action on cancer control across Canada. The foundation document for CPAC is the Canadian Strategy for Cancer Control, which was developed over the course of seven years with a number of stakeholder groups. CRS Cancer Research Society CSO Code The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp) CSCC The Canadian Strategy for Cancer Control is a stakeholder-driven initiative, led by a partnership between the Canadian Cancer Society, National Cancer Institute of Canada, Canadian Association of Provincial Cancer Agencies and Health Canada. Collaboration “a process through which parties who see different aspects of a problem can explore constructively their differences and search for solutions that go beyond their own limited vision of what is possible” (Gray, 1989: 5). There are different types of collaboration. A small body of literature does exist that has segmented the term “collaboration” into a number of different models such as Coexistence, Cooperation, Coordination, Coalition and Coadunation based on factors such as level of autonomy and integration, locus of decision making, and resources deployment (Bailey and Koney, 2000; Frey, Lohmeier, et al., 2004; Gajda, 2004; Hogue, 1991; Peterson, 1991)

National Breast Cancer Research Summit | Other

CTCRI Canadian Tobacco Control Research Initiative Elements of a Research Strategy The content that must be included in a national breast cancer research framework for it to be credible. Examples might include: description of methodology; identification of enabling structure; having both national and local/regional priorities; having a balanced portfolio FCSQ Fondation du cancer du sein du Québec FRSQ Fonds de la recherche en santé du Québec Knowledge Translation The exchange, synthesis and ethically-sound application of knowledge – within a complex system of interactions among researchers and users - to accelerate the capture of the benefits of research for Canadians through improved health, more effective services and products, and a strengthened health care system MSFHR Michael Smith Foundation for Health Research NCIC National Cancer Institute of Canada OICR Ontario Institute for Cancer Research Partnership A partnership is an arrangement in which the parties in a spirit of co-operation agree to carry on an enterprise, contribute to it, by combining property, knowledge or activities and to share its profit. There may or may not be a formal agreement. Thus, a partnership is a specific type of collaboration that describes an ongoing relationship where the entities are vested in each others’ success PHAC Public Health Agency of Canada Research System The funding mechanisms, infrastructure requirements, key processes (such as planning and surveillance) and human resources to support a world class research enterprise SCA Saskatchewan Cancer Agency SRAW Strategic Research Agenda Workshop held by CBCRA in December 2006. TFF Terry Fox Foundation Translational research For the purposes of the Top 10 Priorities report, translational research is defined as endeavours to apply the results of laboratory studies to advance the treatment of breast cancer

National Breast Cancer Research Summit | Other

Mapping The Future
Definitions of terms used in survey of breast cancer survivors, family members/loved ones and others involved in breast cancer (survey instrument of main categories of breast cancer research)
Risk factors and how to prevent breast cancer This kind of research would study the risk factors that make people more likely to get breast cancer. It would include lab and population studies into risks such as smoking, toxic chemicals, air and water pollution, and the use of common medicines such as hormones and anti-depressants. Research in this topic would also look at how family history, breast density, food, vitamins, and exercise may be linked to the risk of breast cancer. Screening for breast cancer (early detection) The kinds of screening tests we now use include mammography, digital and magnetic resonance imaging (MRI). These tests make it possible to find cancer early. Research on this broad topic would focus on finding better and more advanced ways to do breast cancer screening. Breast cancer treatment Research on this topic would look at ways to improve breast cancer treatment that are now in common use across Canada. New drug-based ways to treat cancer, such as vaccines and drugs that target certain cells within the breast, would be explored. Complementary and alternative medicine would also be studied. Caring support and quality of life When a woman learns she has breast cancer, this may have a deep effect on how she feels about her life. Research in this topic includes the benefits of support groups and group therapy. Studies would also look at how breast cancer affects a woman’s social relationships and how certain groups of women (based on their age, ethnic group, etc.) cope with the disease. How women make decisions about treatment and how they use “decision aids” (e.g. brochures) would be studied. A final part of this topic includes research into ways to help women with breast cancer learn to reduce stress. Health systems and health services Research on this topic has a strong community focus. Some studies might evaluate breast cancer screening programs. Studies might also focus on women’s access to: health services, support services, end-of-life care, ongoing help, and health services outside the mainstream. An important part of this type of research is understanding how research findings translate into medical practice. Lab research (also called basic research) Studies that fall under this topic include laboratory research on hormonal factors; the role of tumour suppressor genes and cancer-causing genes; how breast cancer develops over time; cell markers; how cancer spreads; and family history factors. New technologies are used in many of these lab studies.

National Breast Cancer Research Summit | Other