Find a Patient Registry
Patient registries help collect information from people living with specific diseases or groups of diseases. For rare diseases, registries can be especially important because they help build knowledge where information may otherwise be limited.
What is a patient registry?
A registry is an organized way to collect information about people living with a particular disease, condition, or group of conditions.
Registries may collect information about diagnosis, symptoms, treatments, health outcomes, quality of life, and care experiences. Some registries are led by researchers or clinical teams, while others are led by patient organizations, health systems, or national and international networks.
In rare disease, registries can help bring together knowledge that may otherwise be scattered across clinics, provinces, countries, and individual research projects.
Why registries matter for rare diseases
Registries can support learning across care, research, treatment development, policy, and patient experience.
Build Knowledge
Registries help document symptoms, disease progression, treatments, and outcomes over time.
Support research
Registry information can help researchers understand unmet needs and support future studies or trials.
Inform decisions
High-quality data can support care planning, real-world evidence, health technology assessment, and access discussions.
Strengthen voices
Patient-reported outcomes and lived experience data can help capture what matters most to people and families.
Explore the Canada's Drug Agency's Rare Disease Registry Inventory
Canada’s Drug Agency (CDA) has developed a live, searchable inventory of rare disease registries. The inventory includes registries based in Canada as well as international registries that include participants living in Canada.
Important note
CRDN does not manage the registries listed in the Canada’s Drug Agency’s inventory and cannot determine whether someone is eligible to participate. Each registry has its own purpose, criteria, consent process, and contact information. Please contact the registry directly with questions about joining or contributing information.
Not sure where to start?
You may also want to connect with a patient organization or speak with your clinical team.