Bill 3929

                    Current Status

Bill Number:                       3929
Type of Legislation:               General Bill GB
Introducing Body:                  House
Introduced Date:                   19950405
Primary Sponsor:                   P. Harris
All Sponsors:                      P. Harris, Waldrop and Neilson
                                   
Drafted Document Number:           br1\18124ac.95
Companion Bill Number:             703
Residing Body:                     House
Current Committee:                 Medical, Military, Public and
                                   Municipal Affairs Committee 27
                                   H3M
Subject:                           Alzheimer's Disease Registry
                                   Advisory Committee

Body    Date      Action Description                       Com     Leg Involved
______  ________  _______________________________________  _______ ____________

House   19950405  Introduced, read first time,             27 H3M
                  referred to Committee

A BILL

TO AMEND TITLE 44, CHAPTER 36, ARTICLE 1, AS AMENDED, CODE OF LAWS OF SOUTH CAROLINA, 1976, RELATING TO THE STATEWIDE ALZHEIMER'S DISEASE AND RELATED DISORDERS REGISTRY, SO AS TO REVISE THE COMPOSITION OF THE ADVISORY COMMITTEE TO THE REGISTRY, TO PROVIDE FOR THE DUTIES OF THE COMMITTEE, TO REVISE THE CONFIDENTIALITY PROVISIONS, AND TO PROVIDE PENALTIES.

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

SECTION 1. Title 44, Chapter 36, Article 1 of the 1976 Code, as last amended by Act 181 of 1993, is further amended to read:

Section 44-36-10. (A) There is established within the University of South Carolina School of Public Health the Statewide Alzheimer's Disease and Related Disorders Registry to provide a central information data base on individuals with Alzheimer's Disease or related disorders to assist in the development of public policy and planning. 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 or 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.

(B) 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 functions of the state registry includes include, but is are not limited to:

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

(2) providing information for policy planning purposes; and

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

(C) In gathering data the registry shall rely upon, to the extent possible, data from existing sources; however, the registry may contact families and physicians of persons reported to the registry for the purpose of gathering additional data and providing information on available public and private resources.

Section 44-36-20. (A) 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 Directors of the Department of Mental Health and the Department of Disabilities and Special Needs 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 a representative of:

(1) South Carolina Alzheimer's Association chapters;

(2) American Association of Retired Persons, South Carolina Chapters;

(3) Clemson University;

(4) Department of Disabilities and Special Needs;

(5) Department of Health and Environmental Control;

(6) Department of Mental Health;

(7) Department of Social Services;

(8) Department of Health and Human Services;

(9) Medical University of South Carolina;

(10) National Association of Social Workers, South Carolina Chapter;

(11) South Carolina Adult Day Care Association;

(12) South Carolina Association of Area Agencies on Aging;

(13) South Carolina Association of Council on Aging Directors;

(14) South Carolina Association of Nonprofit Homes for the Aging;

(15) South Carolina Association of Residential Care Homes;

(16) South Carolina Health Care Association;

(17) South Carolina Home Care Association;

(18) South Carolina Hospital Association;

(19) South Carolina Medical Association;

(20) South Carolina Nurses' Association;

(21) Alzheimer's Disease and Related Disorders Resource Coordination Center, Office of the Governor, Division on Aging;

(22) University of South Carolina;

(23) South Carolina State University.

(B) The advisory committee shall assist the registry in:

(1) defining the population to be included in the registry including, but not limited to, establishing criteria for identifying patient subjects;

(2) developing procedures and forms for collecting, recording, analyzing, and disseminating data;

(3) developing protocols and procedures to be disseminated to and used by health care providers in identifying subjects for the registry;

(4) developing procedures for approving research projects or participation in research projects.

(C) Members of the advisory committee are not entitled to mileage, per diem, subsistence, or any other form of compensation.

Section 44-36-30. (A) 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.

(B) Except for use in collecting data on deaths from the Bureau of Vital Statistics, Department of Health and Environmental Control, no identifying information collected or maintained by the registry may be released unless consent is obtained from the subject or the subject's legal representative.

Section 44-36-40. Neither the registry or the School of Public Health nor a person, medical facility, or other organization providing or releasing information in accordance with this article may be held liable in a civil or criminal action for divulging confidential information unless the person or organization acted in bad faith or with malicious purpose.

Section 44-36-50. The registry shall submit an annual report to the Office of the Governor, Division on Aging, Alzheimer Disease and Related Disorders Resource Coordination Center; the Department of Health and Environmental Control; and the Budget and Control Board, Division of Research and Statistics, Health Statistics."

SECTION 2. This act takes effect upon approval by the Governor.