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The Prevalence and Accuracy of Self-Reported History of 11 Autoimmune Diseases

GLINDA S. COOPER, JOAN WITHER, TAMARA MCKENZIE, JAIME O. CLAUDIO, SASHA BERNATSKY, CaNIOS GenES Investigators, and PAUL R. FORTIN

ABSTRACT.

Objective.
To determine the prevalence and confirmation rate of autoimmune diseases reported by relatives of patients with lupus and controls.

Methods. Medical histories were obtained by self-report from 626 first-degree relatives of lupus patients and 267 population controls.

Results. Of 178 reports of an autoimmune disease, 44% were confirmed by medical records; excluding those whose medical records were unavailable, the confirmation rate was 76%. The prevalence of at least one confirmed autoimmune disease was 12% in lupus relatives and 2% in controls.

Conclusion. Methods to improve the reliability of self-reported autoimmune disease history could enhance population and clinic-based research. (J Rheumatol First Release Sept 1 2008)

Key Indexing Terms:

AUTOIMMUNE DISEASES
PREVALENCE
EPIDEMIOLOGY
DATA COLLECTION
VALIDATION STUDIES


From the United States Environmental Protection Agency, Washington, DC, USA; Toronto Western Hospital Research Institute, University Health Network, Toronto; Arthritis Centre of Excellence, University of Toronto, Toronto; The Hospital for Sick Children Research Institute, Toronto, Ontario; Division of Rheumatology and Division of Clinical Epidemiology, McGill University Health Centre, Montreal, Quebec; and University of Toronto Lupus Clinic, Centre for Prognosis Studies in the Rheumatic Diseases, Toronto Western Hospital, University Health Network, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.

Supported by the Canadian Institutes of Health Research, grant no. 62840. Dr. Fortin is supported by a Distinguished Senior Investigator Award from The Arthritis Society and by the Arthritis Centre of Excellence, University of Toronto. Dr. Wither is supported by the Arthritis Centre of Excellence. The views expressed in this article are those of the authors and do not necessarily reflect the views or policies of the US Environmental Protection Agency.

G.S. Cooper, PhD, Epidemiologist, US Environmental Protection Agency; J. Wither, MD, PhD, Toronto Western Hospital Research Institute, University Health Network, and Arthritis Centre of Excellence, University of Toronto; T. McKenzie, BSc, MSc, Toronto Western Hospital Research Institute, University Health Network; J.O. Claudio, PhD, Toronto Western Hospital Research Institute, University Health Network; S. Bernatsky, MD, PhD, Divisions of Rheumatology and Clinical Epidemiology, McGill University Health Centre; P.R. Fortin, MD, MPH, Toronto Western Hospital Research Institute, University Health Network, University of Toronto Lupus Clinic, Centre for Prognosis Studies in the Rheumatic Diseases, Toronto Western Hospital, University Health Network; Department of Medicine, University of Toronto.

Address reprint requests to G.S. Cooper, National Center for Environmental Assessment, 8601-P, US Environmental Protection Agency, 1200 Pennsylvania Avenue, NW, Washington, DC 20460. E-mail: cooper.glinda@epa.gov

Accepted for publication May 15, 2008.



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