Question

What government entities have or maintain a registry? How do they get information into their registry and, if we are a hospital, clinic, etc. are we required to provide that information?

Answer 1

US Department of Health and Human Services maintains a Registry of Patient Registries which is a database of existing patient registries in the United States. The registry also helps in facilitating the use of common data fields and definitions in the similar health conditions to enable better opportunities for sharing, comparing and linking the various data sources. The informaton for the purpose of maintenance of the registry is obtained from other patient registry record owners- namely the clinics and hospitals which operate in the healthcare service sector among various other sources. The main users of the this system include government agencies and the public (pharmaceutical and device manufacturers; biomedical journal editors; patients and healthcare consumers; healthcare payers; healthcare providers; healthcare professional associations; and researchers who are interested in patient registries). Hospitals and clinics are mandatorily required to provide the informaton to the Department of health. Hospitals and clinics must provide all inofrmation in relation to office visits, outpatient clinic visits, emergency room visits, inpatient hospitalizations, procedures, pharmacy visits, etc as well as the data on all procedures conducted.