Specialized Medical Databases

Abstract

In the 1960s the high costs for the storage of data in computers, limited many of the earliest medical databases to relatively small collections of patients’ data. A file of patient (or case) identifiers, with a limited amount of clinical and demographic data was usually called a “register”; and the organizational structure that maintained it was called a “registry” (Laszlo et al. 1985; Laszlo 1985). Drolet and Johnson (2008) reviewed the literature related to registers and registries; and noted that the two terms, registries and registers, were often used interchangeably. Registries were often initiated for the follow-up care of patients, for tracking patients with specific diseases of clinical interest, for monitoring trends in the incidence of a disease, or for assessing the use of specific medical procedures (Garfolo and Keltner 1983). Clinical registries typically included selected and limited data, collected from one or more medical institutions or from within a defined geographic region; for patients who had a specific disease and/or had been treated with a specific therapy or medical technology in order to evaluate patient outcomes and/or assess the cost-effectiveness of a medical technology. Health services registries were initiated to monitor trends in the use and costs of health care services, such as the rates of hospitalizations and/or office visits. Epidemiology registries were established to follow patients with specific diseases in order to monitor trends in the prevalence and incidence rates of the diseases. Registries often became indistinguishable from databases as they accumulated more data; and as more powerful computers with cheaper and larger storage capacities became available; registries were then generally referred to as databases.