{"id":293211,"date":"2026-10-21T09:04:26","date_gmt":"2026-10-21T13:04:26","guid":{"rendered":"https:\/\/rarediseases.org\/?p=293211"},"modified":"2026-10-21T09:04:26","modified_gmt":"2026-10-21T13:04:26","slug":"nord-opens-applications-for-two-new-patient-registry-projects","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-opens-applications-for-two-new-patient-registry-projects\/","title":{"rendered":"NORD Opens Applications for Two New Patient Registry Projects"},"content":{"rendered":"

\u00a0Two New Patient Registries to Be Implemented on NORD\u2019s IAMRARE\u00ae Platform with support from the Critical Path Institute.<\/span><\/i>\u00a0<\/span><\/p>\n

NORWELL, Mass., Oct. 21, 2026<\/strong> \u2014 The National Organization for Rare Disorders (NORD\u00ae) announces a request for applications for the implementation of two new patient registries on its\u00a0NORD\u00ae\u00a0IAMRARE\u00ae platform. <\/span>Funding is made available through the Rare Disease Cures Accelerator<\/span>–<\/span>Data and Analytics Platform (RDCA-DAP<\/span>\u00ae<\/span><\/i>), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration (FDA).<\/span>\u00a0<\/span><\/p>\n

\u201cThis 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,\u201d says <\/span>Tracey Sikora, Vice President of Research and Clinical Programs<\/span><\/b> at NORD.<\/span>\u00a0<\/span><\/p>\n

Successful applicants will<\/span> 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.\u202f<\/span>\u00a0<\/span><\/p>\n

Application Criteria<\/span><\/b>\u202f<\/span><\/b>\u00a0<\/span><\/p>\n

Applicants must meet the following criteria:<\/span>\u00a0<\/span><\/p>\n