The origin of registry-based medical research and care

Abstract

During the last decades, registers comprising medical data have played an increasingly important role in medicine, both in health care and research. It is reasonable to expect that their importance will also increase in the future. Thus, a search for the origin of register-based medicine seems meaningful. Admittedly, collections of individual data on a number of patients may have occurred way back in history (Tidsskr Nor Laegeforen, 96, 1976:295). However, if we accept WHO's definition of a register, it implies more than a number of notifications. A register requires that a permanent record be established, that the cases be followed up and that basic statistical tabulations be prepared both on frequency and survival (Epidemiological Methods on the study of chronic diseases, Geneva, WHO Expert committee on Health Statistics, 1967). Thus, a register should aim at improving surveillance, health care and research. If we apply these criteria, we find the origin of register-based medicine in Norway in terms of the National Leprosy Registry, representing the world's first national patient register for any disease, established 1856 (Int J Epidemiol, 2, 1973: 81).