31-2A-17. Alzheimer’s Disease Registry established; purpose; procedures; rules and regulations; confidentiality of data.

There is established within the Department of Public Health 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 data base of individuals with Alzheimer’s disease or related disorders.#

The department shall establish procedures and promulgate rules and regulations for the establishment and operation of the registry. Such procedures, rules, and regulations shall provide for:#

1. (1)

   Collecting and evaluating data regarding the prevalence of Alzheimer’s disease and related disorders in Georgia, including who shall report the data to the registry;#

2. (2)

   Determining what information shall be maintained in the registry and the length of time such data shall be available;#

3. (3)

   Sharing of data for policy planning purposes;#

4. (4)

   Disclosing nonidentifying data to support Alzheimer’s and related disorder research;#

5. (5)

   The methodology by which families and physicians of persons who are reported to the registry shall be contacted to gather additional data; and#

6. (6)

   Information about public and private resources.#

The collected data in the registry shall be confidential, and all persons to whom the data is released shall maintain patient confidentiality. No publication of information, biotechnical research, or medical data shall be made that identifies any patient by name. The registry shall be established and regulated pursuant to the requirements of 42 U.S.C. Section 1301, et seq., and P.L. 104-191, the federal Health Insurance Portability and Accountability Act of 1996.#