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A Quartet, a Plan, a Team: Building a Patient Database to understand Progression in Multiple Sclerosis

Larry Lynd, Ph.D., University of British Columbia; Anthony Traboulsee, M.D., University of British Columbia; Alexandre Prat, M.D., Ph.D., Centre de Recherche du CHUM; Scott Patten, M.D., Ph.D., University of Calgary; Jiwon Oh, M.D., Ph.D., University of Toronto; Roger Tam, Ph.D., University of British Columbia; Shannon Kolind, Ph.D., University of British Columbia.

The quartet? Brain Canada, the Multiple Sclerosis (MS) Society of Canada, Biogen, and Roche Canada contributing over $9 million to an initiative focused on helping people living and affected by MS in Canada. The plan? To study the progression of MS in a Canadian cohort. The team? Led by Dr. Jiwon Oh, based at St. Michael’s Hospital, and comprising nearly 50 leading MS researchers in multiple disciplines from across Canada. The project: a five-year collaborative study, the first of its kind in the country, to better understand the progression in MS, and why some people progress in their disease while others do not. The researchers will try to pinpoint triggers leading to progression and establish methods of managing them while measuring the impact of MS on individuals, as well as on the Canadian healthcare system. “Canada has one of the highest rates of MS in the world, so it is imperative that we learn more about this disease and how it progresses,” said Dr. Oh.

“By gaining a better understanding of MS progression, we can make a significant impact on how people manage their disease and improve the quality of life of many Canadians.”

Progression – or the steady worsening of disease, resulting in increased disability – is a challenging reality faced by people affected by MS. While major advances have been made in MS research over the last thirty years, the mechanisms of progression, and the ways in which researchers and clinicians can track progression, are still not fully understood.

“This incredibly collaborative project has the potential to uncover the mysteries surrounding progression in MS that can alter how we view this disease,” said Dr. Pamela Valentine, President and CEO of the MS Society of Canada.

Through the Canadian Prospective Cohort Study to Understand Progression in Multiple Sclerosis (CanProCo), Dr. Oh and her team hope to collect and analyze data from Canadians living with MS. They will account for biological, physical and socioeconomic factors, allowing for an understanding of each person’s experience with the disease. Using this data, researchers hope to improve the diagnostic process, treatment, long-term monitoring, and potentially prevent MS. Long-term monitoring of MS progression also enables researchers to create a centralized and open source of data. As with the Ice Bucket Challenge approach, this could be relevant for other neurodegenerative diseases including Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis, and Huntington’s because of the potential for common disease mechanisms.

The CanProCo could have significant implications on how those living with MS manage and understand their illness, from diagnosis and through the various stages of the disease. Ultimately, the goal of the cohort is to connect biological findings with real world findings to create a comprehensive picture of progression in MS. The hope is that researchers will better understand the unpredictable nature of MS and find a cure.