99TH GENERAL ASSEMBLY
State of Illinois
2015 and 2016
HB6134
 
Introduced 2/11/2016, by Rep. Litesa E. Wallace
 
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.
  


LRB099 19796 MJP 44195 b

FISCAL NOTE ACT MAY APPLY
 
 
A BILL FOR
 

  
HB6134LRB099 19796 MJP 44195 b


  
1    AN ACT concerning health.
  
 
2    Be it enacted by the People of the State of Illinois,
 
3represented in the General Assembly:
  
 
 
4    Section 1. Short title. This Act may be cited as the 
5Illinois Alzheimer's Disease Registry Act.
 
6    Section 5. Legislative purpose. Due to the increasing rate 
7of those living with Alzheimer's disease, the devastating 
8health effects on its sufferers, and the growing financial 
9burdens on taxpayers, the General Assembly finds it to be 
10beneficial for the State to better understand the full scope of 
11Alzheimer's disease in Illinois. Therefore, for the 
12advancement of research opportunities and to properly address 
13and serve the needs of this population, the General Assembly 
14authorizes the creation of the Illinois Alzheimer's Disease 
15Registry.
 
16    Section 10. Definitions. In this Act:
17    "Department" means the Department of Public Health.
18    "Registry" means the Illinois Alzheimer's Disease 
19Registry.

 
20    Section 15. Department responsibilities.
21    (a) The Department shall establish procedures and adopt 
 
 
HB6134- 2 -LRB099 19796 MJP 44195 b

1rules for the establishment and operation of the Registry. Such 
2procedures and rules shall provide for:
3        (1) collecting and evaluating data regarding the 
4    prevalence of Alzheimer's disease and related disorders in 
5    Illinois, including who shall report the data to the 
6    Registry;
7        (2) determining what information shall be maintained 
8    in the Registry and the length of time that data will be 
9    available;
10        (3) sharing of data for policy planning purposes;
11        (4) disclosing non-identifying data to support 
12    Alzheimer's disease and related disorder research;
13        (5) the methodology by which families and physicians of 
14    persons who are reported to the Registry shall be contacted 
15    to gather additional data; and
16        (6) information about private and public resources.
17    (b) The Department shall provide staff from existing 
18resources to implement and operate the Registry.
 
19    Section 20. Registry purpose and function.
20    (a) The purpose of the Registry shall be to assist in the 
21development of public policy and planning relative to 
22Alzheimer's disease and related disorders.
23    (b) The Registry shall provide a central database of 
24individuals with Alzheimer's disease and related dementias.
 
 
 
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1    Section 25. Registry data privacy.
2    (a) The data collected in the Registry shall be 
3confidential, and all persons to whom the data is released 
4shall maintain patient confidentiality. No publication of 
5information, biotechnical research, or medical data shall be 
6made that identifies any patient by name.
7    (b) The Registry shall be established and regulated to the 
8requirements of the federal Health Insurance Portability and 
9Accountability Act of 1996.
  
 
10    Section 99. Effective date. This Act takes effect upon 
11becoming law.