H 3929 Session 111 (1995-1996)
H 3929 General Bill, By P.B. Harris, Neilson and D.C. Waldrop
Similar(S 703)
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.
04/05/95 House Introduced and read first time HJ-10
04/05/95 House Referred to Committee on Medical, Military,
Public and Municipal Affairs HJ-10
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:
"Article 1
Statewide Alzheimer's Disease and Related
Disorders Registry
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.
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