About the program
The Office of Rare Diseases Research (ORDR) has launched a pilot program to establish the Global Rare Diseases Patient Registry and Data Repository (GRDR). The goal is to enable analyses of data across many rare diseases and to facilitate clinical trials and other studies.
Patient organizations are invited to participate by collecting patient clinical information. The platform being developed can be used by any patient group to establish a registry or to contribute de-identified patient data to the GRDR.
Request for Information
The Request For Information (RFI) response period for participation in the two-year pilot project to establish the Global Rare Diseases Patient Registry and Data Repository (GRDR) has closed. Selections are being finalized by the ORDR and are expected to be announced at the end of April.