What's Happening?
The National Organization for Rare Disorders (NORD) has announced a request for proposals (RFP) aimed at nonprofit patient advocacy organizations for the creation of two new patient registries on the IAMRARE
data and research platform. This initiative is funded by the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP), a collaborative effort with the Critical Path Institute and supported by the U.S. Food and Drug Administration (FDA). The registries are intended to collect patient-reported data to advance research and therapy development for rare diseases. Successful applicants will begin work in April 2026, with NORD providing support in building and hosting the registry site, training sponsors, and establishing protocols for data sharing.
Why It's Important?
This initiative is significant as it aims to enhance the understanding and treatment of rare diseases, which affect over 30 million Americans. By facilitating the creation of patient registries, NORD is helping to gather crucial data that can drive research and policy improvements. The registries will provide a structured platform for patient advocacy organizations to contribute to the rare disease community, potentially leading to breakthroughs in therapy development. The involvement of the FDA underscores the importance of standardized data collection in accelerating the development of treatments for rare diseases.
What's Next?
The application period for the RFP opens on November 15, 2025, and closes on January 10, 2026. Accepted applicants will be notified by February 1, 2026, with implementation beginning in April 2026. Organizations interested in applying must meet specific criteria, including being a 501(c)(3) organization representing a rare disease community and having the resources to support registry work. The registries are expected to run natural history studies for a minimum of five years, contributing data to the RDCA-DAP to support therapy development.
Beyond the Headlines
The creation of these registries not only aids in research but also empowers patient advocacy organizations by providing them with tools to engage with their communities and contribute to the design and success of research projects. This initiative highlights the collaborative efforts between nonprofit organizations, government agencies, and research institutes in addressing the challenges faced by those with rare diseases.
