New partnership focuses on pediatric multiple sclerosis care through multi-regional research
HDRN Canada and Roche Canada have announced a novel partnership that uses health data from multiple provinces to better understand pediatric multiple sclerosis (MS) treatments and care across Canada. It marks HDRN Canada’s first private-sector project and Roche Canada’s first collaboration with HDRN Canada on multi-provincial health data research.
The partnership’s first initiative, the Pediatric MS Unmet Need Study, examines treatment patterns and potential gaps in pediatric MS care through careful use of privacy-protected health data from Alberta, Manitoba, Nova Scotia, and New Brunswick. “This partnership is an important example of how we can work differently in Canada, across provinces, across sectors, and with patients at the centre, to better understand and improve care,” said Dan Edgcumbe, Vice President of Medical and Regulatory Affairs, Roche Canada. “By using health data generated through routine care, we can play our part in transforming multiple sclerosis care for children and young people in Canada.”
We work with the private sector to accelerate innovation that meets population needs, guided by our Public Advisory Council to ensure our approach is safe, trustworthy and grounded in the public interest. ~ Dr. Kim McGrail
Canada has one of the highest rates of MS in the world, with more than 90,000 Canadians living with the disease, according to MS Canada [1] . Although MS typically begins in early adulthood, some people develop symptoms before age 18 [1] . Canada has one of the highest rates of pediatric-onset MS (POMS) in the world [2] , underscoring the need to better understand how children and youth currently access and receive care. Because pediatric MS is rare and challenging to identify [3] , looking across multiple provinces can provide a more complete picture of care patterns than studying one province alone. In this study, each participating data centre analyzes its own data using the same approach. HDRN Canada coordinates the data access process centrally, making it easier for researchers to conduct studies in multiple provinces at once.
“Multi-regional research using health data from more than one province is critical for generating evidence that is robust and inclusive of our diverse population in Canada, which can ultimately lead to better care,” said Dr. Kim McGrail, Scientific Director and CEO of HDRN Canada. “We work with the private sector to accelerate innovation that meets population needs, guided by our Public Advisory Council to ensure our approach is safe, trustworthy and grounded in the public interest.”
The Pediatric MS Unmet Need Study builds on previous Canadian research into POMS, including a 2023 Alberta study by Dr. Camille Yearwood and Dr. Colin Wilbur that looked at how treatment patterns evolved up to 2020 [4] . “To date, children with MS have not had access to treatment advances to the same extent as their adult counterparts,” said Dr. Colin Wilbur, Assistant Professor in the Department of Pediatrics at the University of Alberta. “Partnerships like this are a promising way to advance understanding of diseases like MS in children and to help bring new therapies and better care to our patients.”
The project also demonstrates how provincial health data collected outside controlled research settings can support a more holistic, pan-Canadian approach to research and care. Through collaboration, provincial data centres can contribute regional expertise and infrastructure to generate broader health system insights while maintaining strong privacy protections. “Multi-jurisdictional research is challenging to undertake in Canada since health care is a provincial responsibility and health data are largely siloed. With the coordination and collaboration facilitated by HDRN Canada, we were able to overcome those challenges and complete this important work,” said Dr. Ted McDonald, project lead and Director of DataNB, an HDRN Canada member.
Findings from the Pediatric MS Unmet Need Study are expected to support a scientific publication and help health care decision-makers better understand how pediatric MS care is delivered across Canada.
References
- MS Canada. What is Multiple Sclerosis? Available from: https://mscanada.ca/intro-to-ms/what-is-multiple-sclerosis. Accessed on September 17, 2026.
- Yusuf FLA, Asaf A, Marrie RA, Li P, McKay K, Zhao Y, Zhu F, Maxwell C, Tremlett H. Incidence and prevalence of paediatric-onset multiple sclerosis in two Canadian provinces: a population-based study representing over half of Canada’s population. Journal of Neurology, Neurosurgery & Psychiatry. 2024;95:229-234.
- Yan K, Balijepalli C, Desai K, Gullapalli L, Druyts E. Epidemiology of pediatric multiple sclerosis: a systematic literature review and meta-analysis. Multiple sclerosis and related disorders. 2020 Sep 1;44:102260.
- Yearwood C, Wilbur C. Trends in the Epidemiology and Treatment of Pediatric-Onset Multiple Sclerosis in Alberta, Canada. Journal of Child Neurology. 2023;38(5):321-328.