Abstract
The case registry is a system for recording, storing, and updating standardized information about all individuals who acquire a particular disease or class of disorders from a specified date onwards. It may contain personal, familial, social, clinical, and genetic information. To be most informative, cases should be culled from a precisely defined geographical or administrative area.
Registries produce cumulative, chronologically oriented records about people for epidemiologic and other research as well as statistics for health services planning.
The historical development of case registers for cancer, congenital defects, psychiatric conditions, and other disorders has illustrated the diverse, often multipurpose functions that they may serve. Registries are, or can be, populationbased sampling frames for both retrospective and longitudinal studies, and statistical databases.
Creating a registry involves addressing six common problems and issues: 1) defining objectives; 2) determining scope of coverage of populations and conditions; 3) ascertaining cases reliably and validating diagnoses; 4) choosing accurate, efficient data collection methods; 5) maintaining confidentiality of patient records and family privacy; 6) bearing the (growing) financial burden. Sites are unique, so solutions must be individualized.
Registry operations are complex, expensive, and long-term. The key to their success does not lie in technical and statistical details alone, but in an essential spirit of cooperation and commitment among all participants.
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