A research registry: uses, development, and accuracy.

Many studies of population health, clinical epidemiology, and health services can be supported by a population-based research registry. Such a registry accurately defines the health insurance status for each individual over many years, magnifying the effectiveness of a cross-sectional registry (typically relevant for only a short duration) used in the administration of a health insurance plan. A research registry can distinguish between "well" individuals (no contact with the health care system), loss to follow-up (ineligibility associated with leaving the insurance plan), loss of continuity (two or more unlinked registrations over time for the same person), and mortality. The Manitoba research registry was developed to facilitate longitudinal studies; working within strict confidentiality controls, identifiers for 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 the province. This article provides details on source materials, design, and quality of the registry, highlighting its value both for the development of integrated population health information systems and for research in general.

[1]  L L Roos,et al.  Using insurance claims to measure health status: the Illness Scale. , 1987, Journal of chronic diseases.

[2]  K. Carriere,et al.  Needs-based planning: the case of Manitoba. , 1997, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[3]  LESLIE L. ROOS,et al.  Registries and Administrative Data: Organization and Accuracy , 1993, Medical care.

[4]  C. Mustard,et al.  Continuity of pediatric ambulatory care in a universally insured population. , 1996, Pediatrics.

[5]  R Walld,et al.  Utilization of health care services in patients with severe obstructive sleep apnea. , 1996, Sleep.

[6]  A Wajda,et al.  The art and science of record linkage: methods that work with few identifiers. , 1986, Computers in biology and medicine.

[7]  Lisa M. Schwartz,et al.  Treatment and health outcomes of women and men in a cohort with coronary artery disease. , 1997, Archives of internal medicine.

[8]  S. Derksen,et al.  Age-specific education and income gradients in morbidity and mortality in a Canadian province. , 1997, Social science & medicine.

[9]  E. Acheson,et al.  Textbook of Medical Record Linkage , 1987 .

[10]  H. Bryant,et al.  Breast implants and breast cancer--reanalysis of a linkage study. , 1995, The New England journal of medicine.

[11]  S. Birch,et al.  Proxies for healthcare need among populations: validation of alternatives--a study in Quebec. , 1996, Journal of epidemiology and community health.

[12]  L L Roos,et al.  Estimating the burden of disease. Comparing administrative data and self-reports. , 1997, Medical care.

[13]  J. Hurley,et al.  A needs-based methodology for allocating health care resources in Ontario, Canada: development and an application. , 1991, Social science & medicine.

[14]  N. Roos,et al.  How many general surgeons do you need in rural areas? Three approaches to physician resource planning in southern Manitoba. , 1996, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[15]  H. Newcombe.  Record linking: the design of efficient systems for linking records into individual and family histories. , 1967, American journal of human genetics.

[16]  C. Mustard,et al.  Validation of an Electronic, Population-Based Prescription Database , 1998, The Annals of pharmacotherapy.

[17]  A Wajda,et al.  Record linkage strategies, outpatient procedures, and administrative data. , 1996, Medical care.

[18]  L. Roos,et al.  Delivering prevention: the role of public programs in delivering care to high-risk populations. , 1999, Medical care.

[19]  T. Hassard,et al.  Surveillance of vaccine-related adverse events in the first year of life: a Manitoba cohort study. , 1996, Journal of clinical epidemiology.

[20]  M. Wolfson,et al.  Project on Matching Census 1986 Database and Manitoba Health Care Files: Private Households Component , 1996 .

[21]  L L Roos,et al.  Using administrative data for longitudinal research: comparisons with primary data collection. , 1987, Journal of chronic diseases.

[22]  K. Carriere,et al.  Managing Health Services: How Administrative Data and Population-Based Analyses Can Focus the Agenda , 1998, Health services management research.

[23]  V. Carstairs,et al.  Deprivation and health in Scotland. , 1990, Health bulletin.

[24]  L. Macwilliam,et al.  Measuring the Health of the Population , 1995, Medical care.