Issues and problems in Alzheimer's disease registry development

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 pop...