Registry of Patient Registries (RoPR): Project Overview. Effective Health Care Program Research Report No. 40.

摘要

The purpose of this project is to engage stakeholders in the design and development of the Registry of Patient Registries (RoPR) database system that is compatible with ClinicalTrials.gov and meets the following objectives: (1) provides a searchable database of patient registries in the United States; (2) facilitates the use of common data fields and definitions in similar health conditions; (3) provides a public repository of searchable summary results; (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. This document describes the approach used to design the RoPR and provides an overview of the system design. Stakeholders participated in Web conferences and in-person meetings to discuss use cases, data elements relevant to patient registries, search tools, and policies and procedures.