Insulin-dependent diabetes mellitus: applications of health records for understanding etiology. The Pittsburgh IDDM Registry Group.

The estimation of incidence (or risk) of disease depends on accurate and complete reporting of new cases and precise estimation of the population at risk. Therefore, incidence studies are often based on population-based incidence registries. A critical problem in diabetes research, however, has been the lack of adequate population-based data. For diseases that have a distinct and rapid onset, the best method of obtaining population-based data is to develop registries of community health information. These disease registries form an important tool for assessing the clinical course of diseases and can lead to an understanding of their etiology and pathogenesis. Moreover, by facilitating identification of cases, disease registries can serve as a population source for genetic and immunological testing, the results of which can be directly related to absolute risk. Evaluation of factors associated with a disease can suggest methods for reducing its incidence and even lead to its eradication. Such registries also permit the evaluation of existing or proposed health care measures. Registry information can rapidly be communicated to the local area health authorities to assist in altering patterns of care. Registries are therefore important for understanding the etiology and complications of chronic diseases as well as for evaluation of medical care in populations. For diabetes, and in particular, insulin-dependent diabetes, the development and comparison of registries in diverse populations worldwide may be more important than for other diseases. A major reason for developing them is that the disease is very costly both for patients and society.(ABSTRACT TRUNCATED AT 250 WORDS)