The goal of the Canadian Multiple Sclerosis (MS) Monitoring System is to measure and monitor the evolution and treatment of MS in Canada, in order to improve care and quality of life for the estimated 55,000 to 75,000 Canadians living with MS. This information will help those diagnosed with MS, clinicians, researchers, policymakers and the public to better understand disease patterns across Canada, variation in use of treatments and long-term outcomes.
The system will be developed by the Canadian Institute for Health Information (CIHI) in close collaboration with the Canadian Network of Multiple Sclerosis Clinics and the Multiple Sclerosis Society of Canada . As an independent, not-for-profit organization that collects and analyzes information on the health system and the health of Canadians, CIHI has a wealth of experience in the creation and maintenance of new health data and reporting systems, working in collaboration with partners across jurisdictions.
To design the Canadian Multiple Sclerosis Monitoring System and to identify critical information needs, CIHI will work with clinicians and technical experts from across Canada, representatives from among those with MS and provincial and territorial governments.
In consultation with provincial and territorial governments, CIHI will partner with the Canadian Network of Multiple Sclerosis Clinics to explore the development of a system for collecting information from Canadians with MS on a voluntary basis. The Network’s 22 member clinics are estimated to cover about 80% of Canadians with MS. Opportunities to expand data collection beyond the Canadian Network of Multiple Sclerosis Clinics will be considered as the system is developed with input from clinicians and those diagnosed with MS . Information collected by CIHI will be stored and used in accordance with CIHI’s stringent privacy protection policies and procedures.
With information from the monitoring system, CIHI will produce reports on the status of MS and its treatment in Canada. Regular reports will be made publicly available once sufficient information is collected for analysis purposes. CIHI will work closely with the Canadian Network of Multiple Sclerosis Clinics and the Multiple Sclerosis Society of Canada to ensure that information from the System meets the needs of clinicians and Canadians with MS. Information will be used by clinicians to support MS care, and researchers will be able to access the data in a privacy-sensitive manner to support research in priority areas.