A research registry: Uses, development, and accuracy

Many studies of population health, clinical epidemiology, and health servic es can be supported by a population-based research registry. Such a registr y accurately defines the health insurance status for each individual over m any years, magnifying the effectiveness of a cross-sectional registry (typi cally relevant for only a short duration) used in the administration of a h ealth insurance plan. A research registry can distinguish between "well" in dividuals (no contact with the health care system), loss to follow-up (inel igibility associated with leaving the insurance plan), loss of continuity ( two or more unlinked registrations over time for the same person), and mort ality. The Manitoba research registry was developed to facilitate longitudi nal studies; working within strict confidentiality controls, identifiers fo r each individual known to Manitoba Health since 1970 can be retrieved and a single unique identifier assigned. Careful reporting of changes in family registration numbers has enabled tracing area of residence, marital status , and family characteristics; results are equivalent to a daily census of t he province. This article provides details on source materials, design, and quality of the registry, highlighting its value both for the development o f integrated population health information systems and for research in gene ral. J CLIN EPIDEMIOL 52;1:39-47, 1999. (C) 1999 Elsevier Science Inc.