H. B. 4534
(By Delegates Leach, Perdue, Susman, Hall,
Boggs, Brown and Border)
[Introduced
February 13, 2006
; referred to the
Committee on Health and Human Resources then the
Judiciary.]
A BILL to amend the Code of West Virginia, 1931, as amended, by
adding thereto a new section, designated §16-5R-7, relating to
the establishment of an Alzheimer's Disease Registry within
West Virginia University to act as a central information data
base for policy and planning relative to Alzheimer's disease.
Be it enacted by the Legislature of West Virginia:
That the Code of West Virginia, 1931, as amended, be amended
by adding thereto a new section, designated §16-5R-7, to read as
follows:
ARTICLE 5R. THE ALZHEIMER'S SPECIAL CARE STANDARDS ACT.
§16-5R-7. Establishment of a central registry.
(a) There is established within West Virginia University the
Alzheimer's Disease Registry. The purpose of the registry is to
assist in the development of public policy and planning relative to Alzheimer's disease. The registry shall supply a central data base
of individuals who have been diagnosed with Alzheimer's disease.
(b) The governing board of West Virginia University shall
propose rules pursuant to section six, article one, chapter
eighteen-b of this code to permit the establishment of an
Alzheimer's Disease Registry. The rules should provide for the
following:
(1) Collecting and evaluating data regarding the prevalence of
Alzheimer's disease in West Virginia, including who should report
the data to the registry;
(2) Deciding what information is to be maintained for the
registry and for how long;
(3) Providing information for policy planning purposes;
(4) Providing nonidentifying data to support research on
Alzheimer's disease;
(5) Deciding the manner in which families and physicians of
persons reported to the registry may be contacted to gather
additional data; and
(6) Collecting and providing information on available public
and private resources.
(c) The information contained in the registry shall be
confidential and all persons to whom the data is released shall
assure patient confidentiality. No publication of information,
biochemical research or medical data may be made that identifies the patient by name. The rules promulgated pursuant to this
section shall comply with the requirements of the Health Insurance
Potability and Accountability Act of 1996, 42 U.S.C. §1301, et.
Seq.
NOTE: The purpose of this bill is to establish the
Alzheimer's Disease Registry at West Virginia University.
§16-5R-7 is new; therefore, strike-throughs and underscoring
have been omitted.
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