Mr. Speaker, with regard to the CIHR scientific expert working group, the Canadian Institutes of Health Research established a scientific expert working group, SEWG, to monitor and analyze results from seven U.S. and Canadian MS societies funded studies, as well as from other related studies from around the world related to venous anatomy and MS.
On June 28, 2011, the SEWG reviewed data relating to CCSVI presented at international meetings and then were presented the draft results of a systematic review of peer-reviewed publications regarding CCSVI and MS. An update was provided by study investigators regarding progress of the seven North American studies funded by the MS Society of Canada and U.S. National MS Society. At that time, all seven funded studies had made good progress, many were well on their way to having their target number of subjects recruited, and a total of 1,267 individual with MS and controls were expected to be recruited over the course of the studies.
The SEWG is not mandated to make recommendations on the follow-up care of patients who underwent the CCSVI procedure abroad. The working group did not publish any statements on this issue.
Information on the SEWG, including its terms of reference and the highlights of its meetings, is available at: http://www.cihr.ca/e/44360.html. All members of the SEWG agreed to the CIHR confidentiality and conflict of interest policy.
Primary responsibility for matters related to the administration and delivery of health care services falls within the purview of provincial and territorial governments. Several provincial authorities such as the colleges of physicians and surgeons of Alberta, Nova Scotia and Québec, as well as the Ontario Ministry of Health and Long-Term Care have released guidelines and policies to help physicians in their respective jurisdictions make the best medical decisions for MS patients who were treated for CCSVI outside Canada. Information cited above is available from the provincial authorities.
With regard to the consensus workshop, in February 2011, CIHR provided a one-time grant to the MS Society of Canada to provide operational support for the SEWG. This support included the organization of a consensus workshop in September 2011 on ultrasound imaging techniques.
This grant represents a total investment of $317,500, $158,750 per year, and was funded for a two-year period from April 1, 2010 to March 31, 2012. On February 29, 2012, CIHR informed the MS Society of Canada that the grant was automatically extended until March 31, 2013.
The agreement for this grant was signed on March 2, 2011 by Dr. Alain Beaudet, president of CIHR and Yves Savoie, president and chief executive officer of the MS Society of Canada.
The consensus workshop was held on September 6, 2012 in Toronto. CIHR employees were not involved in the organization or running of this consensus workshop. The workshop helped with the development of a protocol to be incorporated into the trial design. This protocol was part of the request for applications developed by CIHR. For additional information visit: http://www.researchnet-recherchenet.ca/rnr16/viewOpportunityDetails.do?progCd=10266&language=E&fodAgency=CIHR&view=browseArchive&browseArc=true&org=CIHR#moreinformation.
With regard to research proposals, since researchers must be affiliated with an eligible Canadian institution or organization to apply for CIHR funding, applications were only received from Canadian researchers. To respect privacy and confidentiality, CIHR cannot share the number of applications received and only information regarding the successful applicants is published on CIHR’s website.
In April 2012, CIHR announced that a research team was selected through a rigorous peer-review process to conduct a phase I/II clinical trial on CCSVI. To protect the independence of the institutional research ethics boards, REBs, the names of the research team's members and institutions involved have been withheld until REB approval. Once the selected team received ethics approval for two sites, Vancouver and Montreal, the Minister of Health announced the name of the principal investigator of the study: http://www.cihr-irsc.gc.ca/e/45919.html.
Two additional sites, Winnipeg and Quebec, are still seeking ethics approval, a process that is totally independent from CIHR.