Introduced Version
Senate Bill 280 History
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Key: Green = existing Code. Red = new code to be enacted
Senate Bill No. 280
(By Senators Prezioso, Hunter, Sharpe, Caruth, Minard, Dempsey,
Jenkins, Unger, McCabe, Foster, Love and Plymale)
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[Introduced January 26, 2006; referred 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-7, 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-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 provide 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 rule should address:
(1) The collection and evaluation of data regarding the
prevalence of Alzheimer's disease 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) The use of the information for policy planning purposes;
(4) The use of nonidentifying data to support research of
Alzheimer's disease;
(5) The manner in which families and physicians of persons
reported 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 is 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., the Health
Insurance Portability and Accountability Act of 1996.
NOTE: The purpose of this bill is to provide for the
establishment of an Alzheimer's Disease Registry at West Virginia
University.
This section is new; therefore, strike-throughs and
underscoring have been omitted.
This bill was recommended for introduction and passage during
the 2006 Regular Session by the Legislative Oversight Commission on
Health and Human Resources.