A patient registry collects information about people living with a condition, such as their symptoms, treatments, and experiences. Some registries are led by researchers or clinical teams, while others are led by patient organizations, health systems, or national and international networks. For rare diseases, bringing together information from people who may be spread across many clinics and provinces helps researchers understand how a condition changes over time and identify gaps in care.
Find a Patient Registry
Browse RareKids-CAN’s inventory of registries available in Canada for children and adults with rare diseases.
Looking for a rare cancer registry or didn’t find your condition? Browse the published inventory from Canada’s Drug Agency.
Found a registry? Contact its team to ask if you can join, what information they collect, and how it will be used.
Need help? Ask your care team, find a patient organization, or contact Canadian iRARE centres for free, bilingual help finding rare disease information and resources.