West Virginia Code § 16B-11-7

Establishment of a central registry
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(a) To the extent funds are available, the Governing Board of the West Virginia University
shall establish an Alzheimer's Disease Registry to collect information concerning Alzheimer's
disease and related disorders. The purpose of the registry shall be to provide a central
database of information to assist in the development of public policy and planning. The
information collected by the registry shall be analyzed to prepare reports aned perform
studies as necessary when such data identifies information useful in developing policy.
(b) All reporting sources, including hospitals, physicians, facilities, clinics, or other similar
units diagnosing or providing treatment or care for Alzheimer's duisease and related
disorders, shall provide a report of each case to the Alzheimer's Disease Registry in the
format specified. t
(c) All information reported pursuant to this section is confidential and shall be used only for
the purposes set forth herein. A report provided to the Alzheimer's Disease Registry that
discloses the identity of the individual being treateld shall only be released in accordance
with the provisions of the Health Insurance Posrtability and Accountability Act of 1996. No
liability of any kind or character for damages or other relief shall arise or be enforced
against any reporting source by reason of having provided the information or material to the
Alzheimer's Disease Registry. g
(d) The governing board shall propose rules pursuant to the provisions of §29A-3-1 et seq. of
this code to implement this section. The rules shall include, but not be limited to: (1) The
content and design of all forms and reports required by this section; (2) the type of
information to be collected and maintained; (3) the procedures for disclosure of
nonidentifying data to other appropriate research entities; (4)the manner in which reporting
entities or individuals, including families, may be contacted by the registry for additional
relevant information; and (5) any other matter necessary to the administration of this
section.

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