Collaboration Details

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Title of Collaborative Activity:

Registry of Patient Registries (RoPR) Project

Description of Collaborative Activity:

The Agency for Healthcare Research and Quality's (AHRQ) Registry of Patient Registries (RoPR) is a system for tracking “patient registries” that is compatible with the clinical study registry operated by The National Library of Medicine. 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. National Institute of Diabetes and Digestive and Kidney Diseases staff participated extensively in these consultations.

Type of Collaborative Activity:

Resource Development

Year the Collaborative Activity Originated:


NIH Participating Institutes/Centers/Office of the Director:


HHS Agency Collaborators on this Activity: