Illinois General Assembly - Full Text of SB2580
Illinois General Assembly

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Full Text of SB2580  99th General Assembly




State of Illinois
2015 and 2016


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


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 20517 MJP 45049 b






SB2580LRB099 20517 MJP 45049 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
16    Section 10. Definitions. In this Act:
17    "Department" means the Department of Public Health.
18    "Registry" means the Illinois Alzheimer's Disease
20    Section 15. Department responsibilities.
21    (a) The Department shall establish procedures and adopt



SB2580- 2 -LRB099 20517 MJP 45049 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.