Bill 703

                    Current Status

Bill Number:                    703
Ratification Number:            121
Act Number:                     75
Type of Legislation:            General Bill GB
Introducing Body:               Senate
Introduced Date:                19950405
Primary Sponsor:                Giese,
All Sponsors:                   Giese, Passailaigue and
                                Glover
Drafted Document Number:        br1\18340ac.95
Companion Bill Number:          3929
Date Bill Passed both Bodies:   19950518
Date of Last Amendment:         19950516
Governor's Action:              S
Date of Governor's Action:      19950612
Subject:                        Alzheimer's Disease Registry
                                Advisory Committee

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

------  19950612  Act No. A75
------  19950612  Signed by Governor
------  19950606  Ratified R121
Senate  19950518  Concurred in House amendment,
                  enrolled for ratification
House   19950517  Read third time, returned to Senate
                  with amendment
House   19950516  Amended, read second time
House   19950511  Committee report: Favorable with         27 H3M
                  amendment
House   19950502  Introduced, read first time,             27 H3M
                  referred to Committee
Senate  19950501  Read third time, sent to House
Senate  19950427  Read second time
Senate  19950426  Committee report: Favorable              13 SMA
Senate  19950405  Introduced, read first time,             13 SMA
                  referred to Committee

(A75, R121, S703)

AN ACT 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 IMMUNITY FROM LIABILITY.

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

Alzheimer's Registry Advisory Committee, membership, procedures revised; immunity provided

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 Alzheimer's Disease 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.

(B) The functions of the registry include, but are not limited to:

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

(2) providing information for policy planning purposes; and

(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. Patient contact following data received from the State Budget and Control Board Office of Research and Statistics must be done in accordance with regulations approved by the South Carolina Data Oversight Council and promulgated by the Office of Research and Statistics.

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, 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. For purposes of maintaining this registry, the School of Public Health may access appropriate confidential data reported to the Office of Research and Statistics in accordance with Section 44-6-170.

(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 nor 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's 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."

Time effective

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

Approved the 12th day of June, 1995.