NORD Opens Applications for Two New Patient Registry Projects

Two New Patient Registries to Be Implemented on NORD's IAMRARE® Platform with support from the Critical Path Institute.

NORWELL, Mass., Oct. 21, 2026 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on its NORD® IAMRARE® platform. Funding is made available through the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration (FDA).

"This opportunity builds on NORD's work supporting rare disease nonprofits. Research studies led by rare disease communities are an important source of data, and insights from IAMRARE-hosted studies have contributed to the development of clinical outcome assessments, updates to treatment guidelines, and at least one FDA approval," says Tracey Sikora, Vice President of Research and Clinical Programs at NORD.

Successful applicants will work with NORD, beginning in April 2027, to create and launch a patient registry for their rare disease community. NORD will build and host the registry website and will 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. 

Application Criteria
Applicants must meet the following criteria:

• Be a 501(c)(3) organization representing a community that meets the criteria for designation as a rare disease
  • Priority consideration will be given to NORD Member Organizations
• Commitment to a discounted implementation fee of $5,000, due at contract signing
• Commitment and 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
  • A U.S.-based Principal Investigator (PI)
  • Sufficient financial resources to support annual maintenance fees of approximately $5,000 per year. This cost is an estimate and may change based on the level of support.
• Commitment to the submission of data generated by the registry to the RDCA-DAP 
• Support from the disease community and experts who can contribute to the project's design and success, including selecting disease-specific questions and supporting patient engagement and retention

How to Apply: The request for applications is open now and closes on Jan. 10, 2027. Accepted applicants will be notified by Feb. 1, 2027, and registry implementation will begin in April 2027. Apply here.

Questions about this request for applications should be sent to [email protected].

About the NORD® IAMRARE® 
NORD's IAMRARE Platform hosts over 55 live registries sponsored by patient advocacy organizations for the purpose of collecting patient-reported data. For more information, visit Iamrare.org.

About the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
RDCA-DAP is an FDA-sponsored initiative that provides a centralized and standardized infrastructure to support and accelerate rare disease characterization with the goal of accelerating therapy development. For information, visit c-path.org/programs/rdca-dap.

About the National Organization for Rare Disorders (NORD®)
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 more than 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. Learn more at rarediseases.org. 

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SOURCE National Organization for Rare Disorders (NORD®)