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American Journal of Alzheimer's Disease and Other Dementias®, Vol. 3, No. 5, 25-33 (1988)
DOI: 10.1177/153331758800300507

Validating the accuracy and quality of data in the New York State Alzheimer's Disease and Other Dementias Registry

Todd Gerber, MSPH

Mary Ellen Henry, MSW

Geraldine Bunn, BS

NYS Department of Health, Albany, NY

Christine Johnson, PhD, MPH

Henry Ford Hospital, Detroit, Michigan

June White

Alzheimer's Association, Chicago, Illinois

Rona Sayetta, MD, MPH

University of South Carolina, Bureau of Adult and Gerontological Health, New York State, Department of Health Alzheimer's Disease; Dementias Registry

Validity can be measured by the amount of bias in registry data which consists of anything that changes the ability to correctly measure the risk of disease in the population. Three issues are explored which may effect the validity of the data: selection of patients; information or measurement errors; and confounding.

New York State has practiced various measures to control for and prevent bias in the data collected for the Alzheimer's Disease and Other Dementias Registry. In addition to preventing bias through registry design and quality control, possible sources of confounding are identified which may be controlled during statistical analysis.

Besides preventing and controlling bias, it is necessary to continuously measure and evaluate the validity of the data which has already been collected. An important outcome of this examination is the conclusion that an evaluation of diagnostic practices and validity of diagnoses reported to the registry must not be conducted.


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