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Global Rare Disease Patient Registry and Data Repository

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 federalregister.gov/a/2012-03155. 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.  More information may be found at rarediseases.info.nih.gov/GRDR.

 
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