Registries

Patient registries help build real-world evidence and strengthen care, coverage advocacy, and future research. CanPKU+ supports registry participation across our community.

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About patient disease-based registries

A patient disease-based registry collects and maintains data on individuals diagnosed with a specific disease or condition. It focuses on understanding disease progression, variations in clinical presentation, and outcomes. These registries help support research, improve clinical care, and inform public health strategies.

Participating in patient disease-based registries allows individuals to contribute to a deeper understanding of their condition, directly impacting research and treatment advancements. By sharing their medical history, symptoms, and treatment outcomes, patients help researchers identify trends, improve diagnostic methods, and develop more effective therapies.

Choose a registry pathway

Select the registry pathway for your condition to see what is available.

Click the registry pathway for your condition to see what is available.

Important Notice About Data Sharing

CanPKU+ proudly supports participation in rare disease registries like RareX and MSUD Family Support Group, recognizing their role in advancing research. Please note: data shared with these registries may be stored outside of Canada and could be subject to laws such as the USA PATRIOT Act.

We strongly advise not to share banking details, SIN, or other sensitive personal information. CanPKU+ is committed to keeping our community informed and safe while supporting progress in rare disease research.

Questions? Reach out anytime — we’re here to help!

Looking for more information?

Looking for documents on registries? Research? Articles?

Sanofi has an incredible page dedicated to registries. Check it out too!