Patient Registries for Clinical Research

Patient registries are fundamental to biomedical research. Registries provide consistent data for defined populations and can be used to support the study of the determinants and manifestations of disease and provide a picture of the natural history, outcomes of treatment, and experiences of individuals with a given condition or exposure. It is anticipated that electronic health record (EHR) systems will evolve to ubiquitously capture detailed clinical data that supports observational, and ultimately interventional, research. Emerging data representation and exchange standards can enable the interoperability required for automated transmission of clinical data into patient registries. This chapter describes informatics principles and approaches relevant to the design and implementation of patient registries, with emphasis on the ingestion of clinical data and the role of patient registries in research and learning health activities.