EHR-Linked Registries for Studies of Populations

Abstract

Registries are a type of database routinely used to collect a standardized set of information on a defined cohort of patients. They are used in many different areas, from monitoring drug and device safety to comparative effectiveness research to quality improvement efforts looking to standardize care practices for patients with chronic disease. For many different types of research, particularly comparative effectiveness research or research involving children, no single institution has a large enough patient population to perform a proper study. This, coupled with the growing digitization of medical records, has led to an increased effort to create distributed research networks. The widespread adoption of electronic health records (EHRs) has resulted in a strong push to use them as the primary method of collection for registry data, capturing the necessary elements as part of routine clinical care. This would achieve the long-hoped for goal of ``data in once,'' moving clinical and translational research away from the common practice of populating registries through double data entry. This is illustrated by a discussion of the registry infrastructure utilized by the ImproveCareNow network, a collaborative of clinicians focused on improving the care of children with Inflammatory Bowel Disease.