register, registry

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A data file containing information about all the identified cases of a condition, such as cancer, ideally in a region (state, province, or nation) with a defined population. The information should include age, sex, other pertinent identifying data such as occupation and place of residence, and precise diagnosis. The publicly accessible data consist only of tables, graphs, perhaps choropleth maps, but no personal identifying information. Registries are used in many studies of cancer, in which incidence rates can be related to environmental, occupational, and other factors, survival rates can be related to methods of treatment, etc. Registries are used for other conditions also, e.g., twin registries, birth defect registries. Preferably a registry should provide statistically compiled data on all identified cases in a specified jurisdiction with a defined population, so that rates and prevalence can be calculated, but registries are useful even without a defined population because case fatality and survival rates can be calculated for the populations in specified diagnostic categories.

Subjects: Public Health and Epidemiology.

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