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Article

Abstract

The Statewide Alzheimer's Disease and Related Disorders Registry is a voluntary effort to record specific information about South Carolinians who develop Alzheimer's disease and related disorders. This effort was established in April, 1988, with a $200,000 grant from the American Health Assistance Foundation and matching funds from the South Carolina Department of Health and Human Services Finance Commission. Supplemental funding was obtained from the Association of Schools of Public Health and the Centers for Disease Control. In-kind support was provided 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 in Columbia. The staff consists of a director, an administrative assistant, a field coordinator, a data manager, and two graduate research assistants. The staff is supported by consultants in the areas of neurology, genetics, and behavioral science, and field staff.

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. On May 31, 1990, a state law authorizing the registry was signed by Governor Carroll A. Campbell, Jr. This law (R653, H4924) amends Title 44, Code of Laws of So"uth Carolina 1976, relating to health, by adding Chapter 36 so as to establish a voluntary Statewide Alzheimer's Disease and Related Disorders Registry in the School of Public Health. The law has strict confidentiality requirements, but does allow registry staff to contact the families and physicians of patients diagnosed as having Alzheimer's disease or a related disorder to collect relevant data and to provide them with information about available public and private health care resources.

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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