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Advancing Registry Methodology and Transparency

Abstract

Advancing Registry Methodology and Transparency

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, quality improvement, population management, and surveillance. The Agency for Healthcare Research and Quality (AHRQ) has supported several projects to improve the quality and efficiency of patient registries and the transparency of registry-based research. Below are brief descriptions of several ongoing efforts. Visit the project pages to learn more, access reports and white papers, and find out how to participate in these important initiatives.

Registry of Patient Registries (RoPR)

The Registry of Patient Registries (RoPR) contains registry-specific information intended to promote collaboration, reduce redundancy, and improve transparency among registry holders. AHRQ has designed and deployed the RoPR system to complement ClinicalTrials.gov by providing additional registry-specific data elements.

The Registry of Patient Registries project and funding ended on April 15, 2019. AHRQ is actively seeking a collaborator to re‐launch the RoPR. If you are interested in participating or for more information, please email Elise Berliner.

Outcome Measures Framework (OMF)

The Outcome Measures Framework (OMF) is a conceptual model for classifying outcomes that are relevant to patients and providers across most conditions. The OMF is intended to serve as a content model for developing harmonized outcome measures in specific disease areas. Now, AHRQ is assessing the feasibility of using the OMF for that purpose by developing standardized libraries of outcome measures in five clinical areas.

  • Learn more about current initiative and access reports from the earlier phases of the project.

Registries for Evaluating Patient Outcomes: A User's Guide

The AHRQ publication "Registries for Evaluating Patient Outcomes: A User's Guide" was first published in 2007 as a reference handbook with practical information on the design, operation, and analysis of patient registries. It also includes real-world contemporary case examples to illustrate key principles of registry design, operation, and evaluation and to demonstrate different strategies and perspectives to address common challenges. The User's Guide was updated in 2011 and 2014 to address new topics in registry methodology and science. Work is ongoing on the fourth edition.