Standardization of patient registries for improved data collection and outcome measurement.

Abstract

Patient registries provide key data for clinical trials, patient safety and disease progression research. Current standards are insufficient to guide consistent authoring and reuse of registry questions. An outcome measure and its accompanying measurable indicators provide the means for the collection of data over a continuum of care. These data can be translated into comparison research, supporting the development of evidence-based knowledge. Lack of standardized approach to question/answer authoring and identification of outcome measure indicators have been an obstacle to interoperability of registry data with electronic medical and personal health records.