Collaboration Details

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Title of Collaborative Activity:

Registry of Patient Registries (RoPR) Project

Description of Collaborative Activity:

The AHRQ Registry of Patient Registries (RoPR) is a system for tracking “patient registries” that is compatible with the clinical study registry operated by NLM. Since November 2012, data providers registering “observational studies” at can indicate (1) whether the studies also meet AHRQ’s definition of a “patient registry” and, (2) provide more detailed (optional) information about the patient registry using the separate RoPR Data Entry System. Users of the Web site are able to search for registered observational studies that are identified as patient registries. In the future, users will also be able to link from a record at to the corresponding record containing a detailed description of the patient registry at RoPR, if available. As part of this project, broad consultations were carried out with relevant groups. NIDDK staff participated extensively in these consultations.

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