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 development 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 in rare diseases. Successful applicants will collaborate with NORD starting in April 2026 to establish and launch a registry, with a discounted annual rate for NORD Member Organizations. The registries will require a commitment to a natural history study for at least five years, involving a U.S.-based Principal Investigator and sufficient resources to cover annual maintenance fees.
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 providing a structured platform for collecting valuable data that can drive research and policy improvements. The registries will help identify disease patterns, improve patient care, and potentially accelerate the development of therapies. Organizations participating in this initiative will contribute to a centralized database, aiding in the characterization of rare diseases and supporting the development of targeted treatments. This effort underscores the importance of collaboration between patient advocacy groups, researchers, and regulatory bodies in addressing the challenges posed by 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 demonstrate a commitment to the registry work and have the necessary resources to support the initiative. As the registries are developed, they will require ongoing engagement with the rare disease community and experts to ensure their success. This includes selecting disease-specific questions and strategies for patient engagement and retention. The data collected will be submitted to the RDCA-DAP, contributing to a broader understanding of rare diseases and supporting future research efforts.
