Canada’s Drug Agency | Drugs, Health Technologies and Systems.
Canada’s Drug Agency | Drugs, Health Technologies and Systems.

Best Practices and Standards to Enhance the Quality of Rare Disease Registries in Canada

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Project Line:
Methods and Guidelines
Project Number:
MG0026-000

This guidance, developed in collaboration with multiple partners and aligned with international recommendations, establishes recommended best practices and standards for rare disease registries (RDRs) in Canada. It includes the best practices and standards — across governance, data, and information technology infrastructure domains — that were deemed both important and feasible to implement. This guidance will help RDR holders identify a set of recommended best practices and standards to improve the quality of registries. It will also support decision-makers in understanding the quality of RDRs as potential sources of real-world data for decision-making needs.

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Last Updated : February 28, 2025