Update

The Registry of Patient Registries (RoPR) launched on December 1, 2012 and is available online at Patientregistry.ahrq.gov. Registry sponsors may now list their registries.  For more information, please see the following resources:

• About RoPR: This web page provides additional information about the RoPR system. 
• How to List a Registry in the RoPR:  This web page provides step-by-step instructions for listing a registry in the RoPR system.
• Frequently Asked Questions:  This web page answers some common questions about the RoPR.
• Public Search:  This web page provides the ability to search for registries within the RoPR.  

Topic Abstract

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.

This project also includes four secondary objectives designed to support the efficient use of high-quality registries for clinical research. First, the project will develop a framework for collating and characterizing the outcome measures used in patient registries. The initial goal of the framework is to characterize the types of outcome measures that are currently used in patient registries, while the long-term objective is to support efforts to standardize outcome measures and to facilitate access to that information. Currently, there is significant variation in definitions across registries. Standardization would enable registry data to be compared and potentially linked to data from other registries. Second, registries that have expired (i.e., stopped collecting new data) may still contain useful data to inform the development of new studies or to support linkage projects with other data sources. A data archive for expired registries could encourage the efficient use of resources by making data from closed registries available for use in new studies. This project will engage stakeholders in assessing the feasibility and potential value of creating a voluntary data repository for expired registries. Third, the AHRQ publication, “Registries for Evaluating Patient Outcomes: A User’s Guide: 2nd Edition” provides practical information on the design, operation, analysis, and evaluation of patient registries. This project will expand the User’s Guide to address 11 new topics in registry methodology and update the existing chapters to cover new legislation and other changes in registry science. Finally, the project will examine approaches for supporting ongoing stakeholder dialogue on registry best practices and emerging issues. In particular, the project will engage stakeholders in exploring whether a Web-based forum on registries would encourage useful discussion, sharing of best practices, and debate on new challenges.

Expected Outputs and Opportunities for Public Review: There will be approximately five reports from this project. Multiple draft documents from this project will be posted for public review and comment. The documents and expected review timeframes are (updated Dec 2012):

• Draft of the white paper report on the feasibility of and potential strategies for a voluntary data repository for expired registries – FINAL COMPLETED (http://effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=1306) 
• Registry of Patient Registries (RoPR) Draft Use Cases, Policies and Procedures, and Data Elements – FINAL COMPLETED (http://effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=1115)
• Draft framework for listing standard outcome measures used in patient registries – FINAL IN PROGRESS
• Draft of the third edition of the “Registries for Evaluating Patient Outcomes: A User’s Guide” document, including 11 new chapters and updates to the second edition chapter – Quarter 4, 2012.
• Draft of the white paper on a Web-based forum for registry discussions – Quarter 4, 2012.

Expected Date of Project Completion: Fall 2013