Global Rare Disease Patient Registry and Data Repository
The RFI for the global Rare Diseases Patient Registry and Data Repository-GRDR- is published in the federal register. It was released on Friday Feb. 10, under “Document number 2012-03155, Category NOTICES”. The RFI will be open for responses until March 10, 5:00 PM EDT.
RFI Summary: The Office of Rare Diseases Research (ORDR), an organizational component of the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), is inviting patient organizations without a patient registry and those with established patient registries to be considered for participation in a two-year pilot project to establish the Global Rare Diseases Patient Registry and Data Repository (GRDR), and to submit background information about their organization for consideration by the project’s selection committee.