{"id":98987,"date":"2022-11-18T20:56:19","date_gmt":"2022-11-19T01:56:19","guid":{"rendered":"https:\/\/rarediseases.org\/request-for-applications-new-patient-registries\/"},"modified":"2022-11-18T20:56:19","modified_gmt":"2022-11-19T01:56:19","slug":"request-for-applications-new-patient-registries","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/request-for-applications-new-patient-registries\/","title":{"rendered":"Request for Applications: New Patient Registries"},"content":{"rendered":"

The National Organization for Rare Disorders (NORD) announces a request for applications<\/a> for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available through the Rare Disease Cures Accelerator \u2013 Data and Analytics Platform (RDCA-DAP\u00ae), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration.<\/p>\n

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\/<\/a>.<\/p>\n

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.<\/p>\n

Applications from organizations who meet the criteria to create a new registry or migrate an existing registry from another platform will be considered.<\/p>\n

Application Criteria<\/em><\/h3>\n