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Introduced Version Senate Bill 686 History

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sb686 intr
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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