Registry of Patient Registries (RoPR)

Abstract Dec 4, 2012

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. 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 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 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:

Project Timeline

Registry of Patient Registries (RoPR)

May 31, 2011
Topic Initiated
May 31, 2012
May 31, 2012
Oct 31, 2012
Dec 4, 2012
Jun 2, 2014
Sep 27, 2016
Mar 5, 2018
Mar 5, 2018
Feb 11, 2019
Dec 6, 2019
Dec 6, 2019
Nov 30, 2020
Page last reviewed December 2019
Page originally created November 2017

Internet Citation: Abstract: Registry of Patient Registries (RoPR). Content last reviewed December 2019. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.

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