NORD Launches Patient Registry Applications

NORWELL, Mass., Oct. 21, 2026 /CourierPR/ -- The National Organization for Rare Disorders (NORD) has announced a request for applications for the implementation of two new patient registries on its NORD IAMRARE Platform. The initiative, funded through a collaborative agreement with the Critical Path Institute, a partner funded by the U.S. Food and Drug Administration (FDA), aims to support research studies led by rare disease communities and contribute to the development of clinical outcome assessments, treatment guidelines, and even FDA approvals.

NORD, which has been supporting rare disease nonprofits since its founding in 1983, is now inviting applications for the creation and launch of patient registries for rare disease communities. The implementation of these registries will begin in April 2027 and will be managed by NORD, which will build and host the registry websites. NORD will also provide training to registry sponsors as they establish a registry advisory board, develop a study protocol, build and customize surveys, navigate the Institutional Review Board (IRB) process, and determine criteria for sharing data collected by the registry with researchers.

Successful applicants will be required to meet several criteria, including being a 501(c)(3) organization representing a community that meets the criteria for designation as a rare disease. Priority will be given to NORD Member Organizations. Applicants must commit to a discounted implementation fee of $5,000, which is due at contract signing. They must also commit and provide resources to begin registry work in April 2027 and conduct a natural history study for a minimum of five years. At least two paid or volunteer staff members, who collectively devote a minimum of 20 hours per week to the registry, are required. A U.S.-based Principal Investigator (PI) is also necessary. Applicants must commit to the submission of data generated by the registry to the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), and support from the disease community and experts who can contribute to the project's design and success is essential.

The request for applications is open now and closes on January 10, 2027. Accepted applicants will be notified by February 1, 2027, and registry implementation will begin in April 2027. Applications can be submitted through the provided link.

Founded in 1983, the National Organization for Rare Disorders (NORD) is a leading independent, nonpartisan nonprofit organization dedicated to improving the health and lives of more than 30 million Americans with rare diseases. In partnership with over 350 disease-specific member patient organizations and 49 designated NORD Rare Disease Centers of Excellence spanning over 170 academic medical centers, research institutions, and children's hospitals nationwide, NORD advances care, research, education, and advocacy to create a better future for people and families with rare diseases.