The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the 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.
The IAMRARE Platform hosts registries that are sponsored by patient advocacy organizations for the purpose of collecting patient reported data. For more information visit IAMRARE Registry Program.
Successful applicants will actively work with NORD, beginning in April 2025, to create and launch a patient registry at no cost to the sponsoring organization. NORD will build and host the registry site and will provide training to registry sponsors as they establish a registry advisory board, develop a study protocol, build and customize surveys, engage in the IRB review process, and set criteria for the sharing of data collected by the registry.
Applications from organizations who meet the criteria to create a new registry or migrate an existing registry from another platform will be considered.
Application Criteria
- 501(c)(3) organization representing a community that meets the criteria for designation as a rare disease
- Special consideration will go to NORD Platinum level Member Organizations, followed by those who meet the Platinum level qualifications for members (listed here)
- Commitment and resources to begin registry work in April 2025 and run a natural history study for a minimum of 5 years, including:
- At least two staff members (paid or volunteer) with a combined minimum of 20 hours per week to dedicate to the registry
- Sufficient financial resources to support annual maintenance fees of approximately $3,000 per year (this cost is estimated and may change based on levels of support)
- Commitment to the submission of data generated by the registry to the RDCA-DAP
- For information about RDCA-DAP, please visit C-Path Programs RDCA-DAP
- Support from disease community and experts who will be able to contribute to the design and success of the project, including selecting disease-specific questions and patient engagement and retention
Timeline
Release of Request for Applications: November 15, 2024
Applications Due Date: January 10, 2025
Notification of Accepted Applicants: February 1, 2025
Commitment and Resources to Begin Registry Work: April 2025
The application is now open at surveymonkey.com/r/MVD73JH
Questions about this request for applications should be sent to [email protected]
