SB2580 99TH GENERAL ASSEMBLY

LRB099 20517 MJP 45049 b

99TH GENERAL ASSEMBLY
State of Illinois
2015 and 2016
SB2580

Introduced 2/16/2016, by Sen. Toi W. Hutchinson

SYNOPSIS AS INTRODUCED:

New Act

Creates the Illinois Alzheimer's Disease Registry Act. Provides for the creation of the Illinois Alzheimer's Disease Registry under the authority of the Illinois Department of Public Health. Provides that the Registry shall provide a database of individuals with Alzheimer's disease and related dementias. Provides the Department of Public Health with rulemaking powers to establish and operate the Registry in accord with specified responsibilities. Requires the Department of Public Health to provide staff and resources for the Registry. Contains provisions concerning data privacy. Defines terms. Effective immediately.

FISCAL NOTE ACT MAY APPLY

A BILL FOR

AN ACT concerning health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 1. Short title. This Act may be cited as the Illinois Alzheimer's Disease Registry Act.

Section 5. Legislative purpose. Due to the increasing rate of those living with Alzheimer's disease, the devastating health effects on its sufferers, and the growing financial burdens on taxpayers, the General Assembly finds it to be beneficial for the State to better understand the full scope of Alzheimer's disease in Illinois. Therefore, for the advancement of research opportunities and to properly address and serve the needs of this population, the General Assembly authorizes the creation of the Illinois Alzheimer's Disease Registry.

Section 10. Definitions. In this Act:

"Department" means the Department of Public Health.

"Registry" means the Illinois Alzheimer's Disease Registry.

Section 15. Department responsibilities.

(a) The Department shall establish procedures and adopt rules for the establishment and operation of the Registry. Such procedures and rules shall provide for:

(1) collecting and evaluating data regarding the prevalence of Alzheimer's disease and related disorders in Illinois, including who shall report the data to the Registry;

(2) determining what information shall be maintained in the Registry and the length of time that data will be available;

(3) sharing of data for policy planning purposes;

(4) disclosing non-identifying data to support Alzheimer's disease and related disorder research;

(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) information about private and public resources.

(b) The Department shall provide staff from existing resources to implement and operate the Registry.

Section 20. Registry purpose and function.

(a) 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.

(b) The Registry shall provide a central database of individuals with Alzheimer's disease and related dementias.

Section 25. Registry data privacy.

(a) The data collected 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.

(b) The Registry shall be established and regulated to the requirements of the federal Health Insurance Portability and Accountability Act of 1996.

Section 99. Effective date. This Act takes effect upon becoming law.