Development of a research registry for primary care community-based research

A research registry can be of invaluable assistance to physicians and researchers by providing an available panel of patient information that could assist in understanding the patients they are serving, utilization of health care services, and the design and implementation of research studies to improve patient care. We have designed, implemented, and managed such a research registry for our Center for Primary Care Community-Based Research. A registry has been defined as a file of documents containing uniform information about individual persons, collected in a systematic and comprehensive way, in order to serve a predetermined purpose.1 Registry data systems are powerful tools used by researchers in a variety of health-related fields. The application of these systems in epidemiologic, clinical, and health services research are many. They are utilized to estimate disease prevalence and incidence, to estimate health care resource utilization and clinical outcomes, and to track changes in these parameters over time.2 Registries may also serve as data sources for conducting comparisons of health care utilization and outcomes across different categories of patients, for example according to ethnicity, sex, age, or geographic location. Additionally, registries may serve as sampling frames for selecting patients who fulfil specific study eligibility criteria,2 and for use in prevention research. There are many disease-specific research registries that are well known, including cancer, influenza vaccinations and HIV.2 Several others have been developed including cleft lip,3 trauma,4 pediatric neurologic disorders,5 vascular surgery6 and spinal cord dysfunction.7 Despite the growing utilization of disease-specific registries in the United States, and their greater use in Canada and Europe, there is a paucity of research/experience with community-based primary care registries. Such registries may provide invaluable clinical, epidemiologic, utilization, prevention, and outcomes data that would help to improve the quality of life and clinical outcomes for patients as well as provide mechanisms for investigating ways to eliminate the disparities in health care among underserved populations. We have developed a research registry that is not disease-specific, but that encompasses the collective patient population who has consented to be contacted for possible inclusion in any applicable medical research studies. The research registry for the Center for Primary Care Community-Based Research was developed for the purpose of: