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.