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UK IBD Registry:

Where are we now?


Fraser Cummings
Clinical lead UK IBD Registry
Consultant Gastroenterologist
University Hospital Southampton NHS FT

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IBD Registry Aims
The IBD Registry will provide the first ever UK-wide
repository of pseudonymised IBD adult and paediatric
patient data for prospective quality assurance, audit and
research purposes. Bringing this data together for the first
time will:
Drive continuous improvement in patient care and access
to care across the UK
Inform commissioning and service design
Improve our understanding of long term outcomes
Provide local, regional & national data in order to better
define the pattern of ulcerative colitis and Crohns disease
Support IBD research

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Existing EPRs if Local IBD Patient
Registry-compliant Management Systems
Web Tool

Local EPRs and Databases Patient Management System (InfoFlex)


Bioresource system EMIS PMS (was Ascribe)
Rotherham Web-based Tool (InfoFlex)

NHS Digital
pseudonymisation

Quarterly

NHS Digital Annually


NHS routine data
HES
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2016-17 Objectives
Number of sites entering data
Number of patients
Secure funding model
Transition of IBD biologics audit and Quality
improvement program
Data visualisation
Data entry support

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Site Participation
100

91 91 92
90
87

80 80
78

70

63
61
60
55 56
53
50 50

44
42
40

34 34
32
29 30
27
25 25
23
20 20 20
18

12 12 13
11 11 11 10
8
7
6
5
0
42125 42490 42659 42751 42887

Sites submitting Data Sites registered NHS Digital Live sites

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Participation and uptake

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May & June 2017

Funded by:
6 meetings
123
Celltrion Healthcare delegates
Dr Falk Pharma UK
Janssen 41 trusts/
Darlington
Napp Pharmaceuticals health
Takeda UK
Tillotts UK Pharma
boards
Warrington

Birmingham

Cardiff London

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Aim: drive participation

Core
Regional co- information on Local issues,
chairs current IBD e.g. IBD Wales, Role of
Workshops
IBD consultant & Landscape NE regional sponsors
nurse leads National speakers approach
from IBDR & RCP

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Outcomes
This looks like a big task,
I need everybody
Common challenges: involved to make it work
Data entry
How to manage the Doesnt fit with IT policy
consent process
IT barriers How to use the data that
How to get the team is available to prove our
worth?
on board
Understanding more Will this impact on
relationships with patients?
about the Registry (screen between us and my
data entry systems focus on inputting data)
Which system to
choose?
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Key feedback themes

Meeting others in Learning from


Pragmatic, practical Time as team to the same situation / others and sharing
& informative focus & discuss networking ideas / challenges /
opportunity solutions

Learning about how


Registry ties in with
Identifying sources Ideas to help with Realising what we
clinical improvement
of funding consent already have
/ how the Registry
will help our service

Feeling re-energised
Helpful signposting
about Registry /
to support /
feeling that were
resources
moving forward

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Thank you to our speakers
EXETER: Nick Kennedy, Pearl Avery
CARDIFF: Barney Hawthorne, Helen Ludlow
WARRINGTON: Keith Bodger, Andrew Kneebone, Sree
Subramanian
DARLINGTON: John Mansfield
LONDON: Stuart Bloom, Kay Greveson, Kay Crook
BIRMINGHAM: Matt Brookes, Mel Love, Helen Steed,
Sam Rhodes
Plus Fraser Cummings, Richard Driscoll, Mark Allan,
Susan Murray

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IBD Biologics Audit
KPIs 2017-18
Initiation
Opportunistic screening
Recording of disease activity
Is there a record of the registry being discussed
with the patient?
3 month review
Recording of disease activity
12 month review
Recording of disease activity

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- with IBD events added

Onset of IBD Biologics


symptom diagnosis started
s

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Consent

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Projects
Anaemia service evaluation
VEST
PinPoint
Consent project (CCUK/Liverpool)

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Funding
Subscription
Webtool
QI/Audit program
Pharma industry funding

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Conclusions
Growth of number of sites
Growth in numbers of patients
Financial model established
2018
Focus on biologics and depth of data
Data entry support
Analysis of data
QI/data visualisation
HES data analysis
Local reporting

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