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. Since 2005, the Agency for Healthcare Research and Quality (AHRQ) has supported projects to improve the quality and efficiency of patient registries and the transparency of registry-based research. Below are brief descriptions of several efforts. Visit the project pages to learn more and access reports and white papers.
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 foundation for the Outcome Measures Harmonization project is the Outcome Measures Framework, 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. Building on this, AHRQ developed standardized libraries of outcome measures in five clinical areas—atrial fibrillation, asthma, depression, lung cancer, and lumbar spondylolisthesis. AHRQ then supported the next step of implementing the standardized library of depression outcome measures in two patient registries and a health system.
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, 2014, and 2020 to address new topics in registry methodology and science.