New Funding Opportunity to Enhance Rare Disease Registries

Qualified rare disease registry owners can submit funding proposals to enhance the infrastructure, data quality, and utility of rare disease registries.

CADTH is launching an open call for funding to support efforts to improve the quality and usability of real-world data from rare disease registries.

Through a Request for Proposals (RFP) process, we will provide funding to successful rare disease registry applicants who are working to generate higher quality data. The funding can also help registry owners demonstrate the readiness of their data to potentially help answer decision-making questions.

This funding opportunity is 1 of several CADTH-led initiatives to improve the collection and use of evidence to inform and support rare disease decision-making. This work is undertaken in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases.

We recognize that rare disease registries are at different stages of maturity and that a one-size-fits-all approach to registry enhancements is not feasible. Instead, the funding will provide an opportunity for rare disease registries to self-assess their existing state and propose targeted and measurable quality improvement initiatives that can catalyze their ongoing growth and development. Depending on the maturity and readiness of registries to support decision-making needs, funding may be used to support foundational registry developments, data quality enhancements, and/or analytical capabilities to answer regulatory, health technology assessment, and payer evidence questions.  

Overview

This time-limited funding opportunity runs until March 31, 2025, and is available to established registries that are actively enrolling and collecting data, and to new registries that are just starting to build their infrastructure. The RFP application process is twofold, whereby eligible registry owners are first invited to submit a Letter of Intent to apply. CADTH will then invite select registry owners to submit a full proposal. Successful applicants will be notified on May 31, 2024.

Anticipated Timelines

Funding Launch: March 27, 2024

Letter of Intent Deadline: April 10, 2024

First Notice of Decision: April 17, 2024

Full Proposal Submission Deadline: May 17, 2024

Second Notice of Decision: May 31, 2024

Work Commencement: June 10, 2024

Work Completion: March 31, 2025

Learn More

To learn more about this funding opportunity, visit our website.