Bill S-204 also calls for the establishment of an advisory panel composed of expertswho have been or who are actively engaged in testing or treating CCSVI. Will theprocess you intend to put in place include these experts? If so, who are the experts youwill involve
in establishing the criteria for a call for research proposals,
in selecting the best proposals,
in developing the standards for testing and treatment, and
in developing the training and expertise required to conduct the trials
in developing the tracking mechanisms for those Canadians who are or who havebeen treated outside Canada to ensure that data on the efficacy of the treatment,the impact on quality of life, the duration of the treatment, and possible sideeffects or risks are part of future decisions that will be made on providing testingand treatment for CCSVI?
What are the timelines for the activities in Item 2?
What are the timelines for beginning and ending each phase of the clinical trials?
What are the criteria for selecting participants for the trials? Who will make theselection?
Who will assess the participants before and after testing and treatment for CCSVI? Whatwill this assessment include and what is the period of time for the assessment? How willthe assessments be recorded (irrefutable objectivity and honesty are essential)?
Who will interpret the data collected from the clinical trials? What are the criteria forinterpretation?
Where will the data collected from these trials be deposited and how will the data beused?
. When will the data be made public (without the names of participants)?
How much money is available for each phase of the trials? Who will decide on theallocation of the money? What are the criteria for allocating the money?
. Will Canadians with MS be allowed access to treatment on compassionate groundsoutside of clinical trials?
Linda Hume-Sastre Amy Gaylord Preston Anna Delorme Judy Filipkowski Diana PricePresident Vice-President Director Director Directorwww.CCSVIOntario.ca Facebook: C.C.S.V.I. Ontario I.V.C.C. Ontario