Making Progress to Deploy an Obesity Outcomes Registry
Richard Atkinson, MD, and Ted Kyle, RPh, served on an expert panel meeting in Alexandria, VA, helping to deploy a registry of outcome databases for obesity and other chronic diseases.
This meeting is part of the Registry of Patient Registries (RoPR) project, sponsored by the Agency for Healthcare Research and Quality (AHRQ). The goal is to design and deploy a searchable central listing of patient registries in the United States to enable interested parties to identify registries in a particular area (to promote collaboration, reduce redundancy, and improve transparency). The final system will be designed to be integrated with ClinicalTrials.gov, the registry of federally and privately supported clinical trials conducted in the United States and around the world.
One of the goals of the RoPR project is to promote the use of standard medical staging criteria and outcome measures across registries. Standardization will include both common definitions and common syntax (e.g., “six minute walk” instead of variations such as “6-minute walk”). Current variations in definitions between registries make it difficult to compare data across registries or link data from different registries. Standardization would help identify registries capturing relevant or similar information for collaboration or linkage, reduce redundancy, and increase the value of new registries that use the standardized data elements. The RoPR would collect metadata on patient registries, including a catalog of commonly used demographics, risk factors/staging criteria, clinical and treatment information, quality and outcome measures. By providing a system to describe common data elements and measures by condition in RoPR, information will ultimately be more useful, understandable, reproducible, and interoperable across patient registries.