Senate Bill No. 686
(By Senators Prezioso, Jenkins, Unger, Foster, Hunter and Minard)
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[Introduced March 21, 2005; referred to the Committee
on Health and Human Resources; and then to the Committee on
Finance.]
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A BILL to amend the Code of West Virginia, 1931, as amended, by
adding thereto a new section, designated §16-5R-6, relating to
establishing an Alzheimer's Disease Registry within West
Virginia University to act as a central information database
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-6, to read as
follows:
ARTICLE 5R. THE ALZHEIMER'S SPECIAL CARE STANDARDS ACT.
§16-5R-6. Establishment of a central registry.
(a) There is established within West Virginia University the
Alzheimer's Disease Registry. The purpose of the registry shall be
to assist in the development of public policy and planning relative to Alzheimer's disease and related disorders. The registry shall
provide a central database of individuals with Alzheimer's disease
or related disorders.
(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 rule should provide for:
(1) Collecting and evaluating data regarding the prevalence of
Alzheimer's disease and related disorders in West Virginia,
including who should report the data to the registry;
(2) What information is to be maintained on the registry and
for how long;
(3) Providing information for policy planning purposes;
(4) Providing nonidentifying data to support research of
Alzheimer's disease and related disorders;
(5) The manner in which families and physicians of persons
reporting to the registry may be contacted to gather additional
data; and
(6) Information on available public and private resources.
(c) The information contained on the registry shall be
confidential and all persons to whom the data is released shall
assure patient confidentiality. No publication of information,
biotechnical 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 42 U.S.C. §1301, et.
seq. and the Health Insurance Portability and Accountability Act
of 1996.
NOTE: The purpose of this bill is to establish an Alzheimer's
Disease Registry within West Virginia University to act as a
central information database for policy and planning relative to
Alzheimer's disease.
§16-5R-6 is new; therefore, strike-throughs and underscoring
have been omitted.
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