Find a Patient Registry
Patient registries are powerful tools that help improve care, accelerate research, and inform health policy. For people living with rare diseases, registries can be especially important—they capture essential data on diagnosis, treatments, symptoms, and outcomes that might not be available anywhere else.
Many rare disease organizations, research groups, and clinical teams in Canada have developed or are contributing to patient registries. Canada’s Drug Agency (CDA) has compiled a live and searchable inventory of patient registries in Canada, as well as international registries that include patients in Canada.