An Inventory of Rare Disease Registries in the Canadian Landscape

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Project Status:

Completed

Project Line:

Health Technology Review

Project Sub Line:

Environmental Scan

Project Number:

CP0033-000

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. Through this inventory, we have an initial understanding of the potential capabilities of RDRs as sources of data for informing regulatory, health technology assessment, and payer needs. The information gathered in the inventory will support future initiatives to assess the suitability of RDRs for generating decision-grade real-world evidence.

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An Inventory Report of Rare Disease Registries in the Canadian Landscape View PDF

Last Updated : August 29, 2024