Development of the RoPR
Background: A patient registry is an organized system that uses observational research methods to collect data for the scientific assessment of patient outcomes. Patient registries are an important tool for clinical research, but currently there is no central database designed specifically to list patient registries. ClinicalTrials.gov is a database and public website that provides information about research studies, but it is designed primarily for providing information about experimental studies, such as randomized drug trials, rather than observational studies, such as patient registries. Not all data fields in ClinicalTrials.gov are applicable or relevant to patient registries, and some data that would be useful for describing registries are not collected. A database and searchable public website that is designed specifically to provide information about patient registries would support research collaborations, reduce redundancies, encourage the efficient use of resources, and improve transparency in observational clinical research.
Objectives: The primary goal of this project is to engage stakeholders in the design and development of a Registry of Patient Registries (RoPR) database system that is compatible with ClinicalTrials.gov and meets the following objectives: 1) provides a searchable database of existing patient registries in the United States; 2) facilitates the use of common data fields and definitions in similar health conditions to improve opportunities for sharing, comparing, and linkage; 3) provides a public repository of searchable summary results, including results from registries that have not yet been published in the peer-reviewed literature; 4) offers a search tool to locate existing data that researchers can request for use in new studies; and 5) serves as a recruitment tool for researchers and patients interested in participating in patient registries.
Completed Reports: The five reports related to the design and development of the RoPR are listed below: