Registry of Patient Registries

The Registry of Patient Registries project and funding ended on April 15, 2019. The purpose of this project was to engage stakeholders in the design and development of the Registry of Patient Registries (RoPR) database system that was compatible with ClinicalTrials.gov and met the following objectives:

1. provided a searchable database of patient registries in the United States;
2. facilitated the use of common data fields and definitions in similar health conditions;
3. provided a public repository of searchable summary results;
4. offered a search tool to locate existing data that researchers could request for use in new studies; and
5. served as a recruitment tool for researchers and patients interested in participating in patient registries.