[Health care registries a community asset. Centralized registries of health care data can save life and improve quality of life]

Abstract

The article is a review of how national epidemiological data bases in Sweden can be used for research and statistical purposes. Over 500 major applications from research groups and others are dealt with annually by the National Cancer, Hospital discharge, Medical birth, and Cause-of-death registries, providing essential data for studies which have yielded well over a thousand peer-reviewed scientific papers. In over 40 years' Swedish experience of administering the registration of sensitive patient-specific information on diseases, there has not been a single case of data misuse. It is concluded that the benefits of national epidemiological registries far outweigh the risks and marginal costs of maintaining them.