Nov. 18, 2022
Posted by Rohan Narayanan
The National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four 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 https://rarediseases.org/iamrare-registry-program/.
Successful applicants will actively work with NORD, beginning in April 2023, to create and launch a patient registry with no implementation costs charged 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.
- 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 2023 and run a natural history study for a minimum of 5 years, including:
- At least .5 staff FTE 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 https://c-path.org/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
Release of request for applications: November 21, 2022
Applications due date: January 15, 2023
Notification of Accepted Applicants: February 15, 2023
Registry Implementation begins: April 2023