Posted by Michael Wonder on 03 Mar 2025
Canada’s Drug Agency publishes new guidance for rare disease registries in Canada
28 February 2025 - On Rare Disease Day — a global event dedicated to raising awareness for the millions of people living with rare diseases — Canada’s Drug Agency has published new pan-Canadian guidance on best practices and standards for rare disease registries.
The guidance, aligned with international recommendations, supports RDR holders to enhance the transparency, content, and quality of their data, and strengthen their capacity to contribute to health care decision-making.
