Nature Medicine | Spoonful of Medicine

US plans a registry of patient registries to serve as a one-stop shop of volunteers for observational studies

By Monica Heger

Building on the success of ClinicalTrials.gov, a registry of nearly 100,000 federally and privately funded clinical trials around the world, the US government is now planning to build a registry of patient registries. The ultimate goal of the effort is to create a one-stop shop where physicians, patients and researchers can find these lists of individuals who have made themselves available for observational medical studies.

The ‘metaregistry’ will be searchable, and each entry will contain contact information for the person running the registry. At least initially, the catalog will not contain patient-specific information, but researchers could contact a given registry owner to obtain that data. The goal is that the database would serve patients and physicians looking for specific disease registries, researchers investigating a particular disease and drug developers.

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