About CARELeuko
The Canadian Association for Research Excellence in Leukodystrophy (CARELeuko) is Canada's first national research network dedicated to transforming the future for leukodystrophy patients and their families. Established as an initiative of the Research Institute of the McGill University Health Centre (RI-MUHC) and supported through RI-MUHC funding, CARELeuko brings together researchers, clinicians, patient advocates, and industry partners from across Canada. Together, we foster collaboration and drive progress in the diagnosis, treatment, and care of leukodystrophy patients nationally and worldwide.
The Need for CARELeuko
There are many critical knowledge gaps in leukodystrophy research and clinical care within Canada and globally. CARELeuko aims to address and improve the following:
Patient Diagnosis
20-30% of pediatric and 50-70% adult patients lack a molecular diagnosis
Leukodystrophy Therapies
Effective disease-modifying therapies do not exist for most leukodystrophies
Patient Outcomes
Patient and family-reported outcomes on disease burden is limited
Disease Pathophysiology
The pathophysiology of many leukodystrophies is still poorly understood
Clinical Data
Natural history data and important markers for effective treatments are lacking
Care Guidelines
Evidence-based guidelines for the care of affected Canadian patients and families do not exist