Details
Canada currently lacks a consolidated and centralized inventory of rare disease registries (RDRs). To address this gap, we created an inventory of RDRs, including 66 RDRs in Canada and 82 international RDRs that include patients living in Canada. This inventory captures RDRs that have the potential for generating real-world evidence to answer specific questions (e.g., natural history, postmarket therapy assessment). This inventory includes high-level information about RDRs that are important to decision-makers, such as coverage in Canada, sources of data, and types of data.