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Article

Abstract

The Statewide Alzheimer's Disease and Related Disorders Registry is a voluntary statewide effort to record specific information about South Carolinians who develop AD and related disorders. This effort was established in April, 1988, with a $200,000 grant from the American Health Assistance Foundation. This initial award was matched with funds from the South Carolina Department of Health and Human Services Finance Commission, and supplemental funding was obtained from the Association of Schools of Public Health and the Centers for Disease Control. In addition, in-kind support was received from a consortium of public and private agencies. The registry is housed in the Health Sciences Building of the School of Public Health at the University of South Carolina.

The staff consists of a director, medical director, assistant director, secretary, and four graduate research assistants in the office; three research nurses are in the field. This project has received widespread support and interest from the academic community, lay support groups, state agencies, and other public and private organizations as part of a statewide effort to study this emerging major public health problem. The registry is supported by an Advisory Committee and a User Policy Council (described below).

The goals of the registry are to collect information on all cases of dementia in South Carolina with a diagnosis as of January 1 , 1988; to project estimated prevalence of all types of dementia by various demographic characteristics; to help family members and caregivers identify health and human service resources that provide needed care and services; to provide information to public agencies for planning purposes on the needs of people with dementia and their caregivers; and to study familial transmission of Alzheimer's disease and other dementing illnesses.

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