NORD Hopes to Add 4 Patient Registries to IAMRARE Platform

Patient advocacy groups must apply by Jan. 15 for their registries to be considered

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by Mary Chapman |

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The National Organization for Rare Disorders (NORD) is requesting applications from patient advocacy organizations to host new or existing patient registries for rare disorders, such as Lambert-Eaton myasthenic syndrome, on its IAMRARE platform.

To expand its collection of patient-reported data, which could lead to new treatments and better care, the platform will add up to four new registries at no cost to the advocacy organizations. Registry platform implementation expenses will be covered by the Rare Disease Cures Accelerator — Data and Analytics Platform (RDCA-DAP), developed by NORD and the Critical Path Institute.

Applications are due by Jan. 15, and accepted applicants will be notified by Feb. 15. Beginning in April, selected organizations will work with NORD to create and deploy registries for the patients and disorders they represent. Where applicable, NORD will also migrate an existing registry from another platform, according to its announcement.

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NORD will help each accepted organization with setting up its registry

NORD will construct and host registry sites and help each organization establish a registry advisory board, craft and tailor surveys, develop a study protocol, participate in the Institutional Review Board process, and establish criteria for registry data sharing.

To qualify, applicants must:

  • Be a nonprofit organization that represents a designated rare disease;
  • Have the commitment and resources to begin registry work next April and run a natural history study for at least five years. Although implementation costs are covered, organizations must be able to handle annual registry maintenance fees of approximately $3,000. They also must dedicate at least 0.5 staff full-time equivalents to the registry;
  • Commit to submitting registry-generated data to the RDCA-DAP;
  • Have disease community members and experts who can contribute to the registry’s design, development of disease-specific questions, and help with patient engagement and retention.

NORD will give special consideration to its Platinum-level member organizations, followed by those who meet qualifications for that category.

To date, the IAMRARE registry platform includes more than 40 rare conditions, 125,000 survey submissions, and 13,600 enrollees. Its secure and user-friendly cloud-based design allows patients and organizations to inform and shape rare disease research and translational science through the establishment of customized registries. Data collection through the registries helps define the natural progression of disease, which can result in improved therapeutics and overall care.

For more information about the request for applications, send an email to [email protected] NORD is a nonprofit clearinghouse for information about rare diseases.