Bill 4924

                    Current Status

Bill Number:               4924
Ratification Number:       653
Act Number                 532
Introducing Body:          House
Subject:                   Alzheimer's Disease and Related
                           Disorders Registry established

(A532, R653, H4924)

AN ACT TO AMEND TITLE 44, CODE OF LAWS OF SOUTH CAROLINA, 1976, RELATING TO HEALTH, BY ADDING CHAPTER 36 SO AS TO ESTABLISH A STATEWIDE ALZHEIMER'S DISEASE AND RELATED DISORDERS REGISTRY.

Be it enacted by the General Assembly of the State of South Carolina:

Alzheimer's Disease and Related Disorders Registry established

SECTION 1. The 1976 Code is amended by adding:

Section 44-36-10. There is established the Statewide Alzheimer's Disease and Related Disorders Registry. Each hospital, clinic, individual practitioner, or other agency or facility providing health care may participate in this registry by making available to the School of Public Health, University of South Carolina, abstracts of its records of patients who have been diagnosed as having Alzheimer's disease or a related disorder, after receiving a written authorization from the patient or other legally responsible party for the release of the information. These abstracts may include the name, address, sex, race, and any other pertinent identifying information regarding each patient.

From the abstracts received, the School of Public Health shall establish and maintain a Statewide Alzheimer's Disease and Related Disorders Registry. The purpose of the state registry includes, but is not limited to:

(1) collecting data to evaluate the incidence and causes of Alzheimer's disease and related disorders;

(2) providing data to support research on Alzheimer's disease and related disorders.

Section 44-36-20. The School of Public Health shall appoint an advisory committee to assist in maintaining this registry which must include, but is not limited to, the Commissioners of the Department of Mental Health and the Department of Mental Retardation or their designees and one representative of each of the following groups: practicing physicians treating patients with Alzheimer's disease and related disorders, clinical psychologists evaluating and treating patients with Alzheimer's disease and related disorders, neuropathologists, researchers engaged in clinical investigations related to dementias, basic science researchers engaged in studies related to dementias, nursing home administrators, the Medical University of South Carolina, and the University of South Carolina Medical School.

The advisory committee shall assist the School of Public Health in developing protocols, choosing necessary psychometric validation instruments, and other technical mechanisms.

Section 44-36-30. The School of Public Health and all persons to whom data is released shall keep all patient information confidential. No publication of information, biomedical research, or medical data may be made which identifies the patients. However, the School of Public Health may 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 School of Public Health also may distribute any protocols or other materials provided by the advisory committee to practicing physicians and clinical psychologists."

Time effective

SECTION 2. This act takes effect July 1, 1990.

Approved the 31st day of May, 1990.