DPH-NEURO DISEASE PROGRESS ACT

Illinois General Assembly - Full Text of SB3804

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104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
SB3804

Introduced 2/6/2026, by Sen. Linda Holmes

SYNOPSIS AS INTRODUCED:

New Act
30 ILCS 105/5.1038 new

Creates the Neurodegenerative Disease Patient Protection and Progress
Act. Requires the Department of Public Health to convene a
Neurodegenerative Disease Advisory Council within the Department. Sets
forth provisions concerning the membership of the Advisory Council, terms
of the members, meetings of the Advisory Council, and administrative
support, and duties of the Advisory Council Provides that the Director of
Public Health shall designate or hire a full-time Neurodegenerative
Disease Coordinator within the Department to implement and administer the
Act. Requires the Coordinator, acting through and under the supervision of
the Director, and with input from the Advisory Council, to develop and
publish a State plan to address neurodegenerative diseases. Sets forth
required components of the Plan. Establishes a voluntary statewide
clinical and population registry to collect de-identified information and,
with the patient's informed consent, limited identifying information, to
(i) improve understanding of burden imposed by neurodegenerative diseases,
natural history, and outcomes, (ii) facilitate public health planning and
service delivery, and (iii) support research consistent with applicable
privacy protections. Establishes the Neurodegenerative Disease Research
Support And Grant Fund to make grants to public or private not-for-profit
entities for the purpose of conducting neurodegenerative disease research.
Sets forth provisions concerning equity and rural access; coordination
with federal programs, academic centers, and private partners; reporting;
limitations; and rulemaking. Amends the State Finance Act to make a
conforming change. Effective immediately.
LRB104 18503 TRT 31945 b

A BILL FOR

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1

AN ACT concerning health.

2

Be it enacted by the People of the State of Illinois,
3
represented in the General Assembly:

4

Section 1.
Short title.
This Act may be cited as the
5
Neurodegenerative Disease Patient Protection and Progress Act.

6

Section 5.
Findings; legislative intent.
7

(a) The General Assembly finds that:
8

(1) Neurodegenerative diseases, including Parkinson's
9

disease, atypical parkinsonism, amyotrophic lateral
10

sclerosis, Huntington's disease, multiple sclerosis, and
11

related neurodegenerative conditions impose substantial
12

human, social, and economic burdens on individuals,
13

families, and communities. Through coordinated State
14

action, the State can improve surveillance, research,
15

care, and support services, and a State plan and advisory
16

structure will facilitate better outcomes.
17

(2) Certain environmental and occupational exposures,
18

including pesticides, solvents, and other toxic
19

substances, have been associated in scientific studies
20

with an increased risk of developing Parkinson's disease
21

or atypical parkinsonism, amyotrophic lateral sclerosis,
22

Huntington's disease, multiple sclerosis, and related
23

neurodegenerative conditions. Prevention-oriented

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education and risk-reduction strategies are important
2

components of public health planning and coordination
3

among State agencies is necessary to evaluate emerging
4

evidence, reduce avoidable exposures, and protect the
5

health of Illinois residents.
6

(b) It is the intent of the General Assembly to establish a
7
coordinated framework to guide statewide planning, promote
8
equitable access to specialty care and supportive services,
9
strengthen data collection and research capacity, and provide
10
regular public reporting on progress and outcomes, while
11
ensuring that patient privacy is protected and that
12
recommendations regarding environmental risk factors are
13
developed through scientific review and interagency
14
collaboration consistent with existing State authority.

15

Section 10.
Definitions.
As used in this Act:
16

"Advisory Council" means the Neurodegenerative Disease
17
Advisory Council created under this Act.
18

"Annual Report" means the single consolidated report
19
required under this Act regarding the implementation of this
20
Act.
21

"Care coordination" means services that assist persons
22
living with neurodegenerative diseases in navigating health
23
care, social services, long-term services and supports, and
24
related community resources.
25

"Caregiver" means an individual 18 years of age or older

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who, because of the age, disability, chronic illness, or
2
functional limitation of another individual, regularly
3
provides the care recipient with assistance or supervision
4
necessary to support the care recipient's health, safety, or
5
daily functioning, including assistance with activities of
6
daily living or instrumental activities of daily living, and
7
who is identified by the care recipient or the care
8
recipient's legal representative as a caregiver. "Caregiver"
9
does not include an individual who provides services to the
10
care recipient for compensation as an employee or contractor
11
in the ordinary course of a business or profession, including
12
a health care professional or direct care worker, unless the
13
individual is also a family member providing care outside the
14
compensated relationship.
15

"De-identified information" means health information that
16
does not identify an individual and with respect to which
17
there is no reasonable basis to believe the information can be
18
used to identify an individual, consistent with applicable
19
federal law and guidance.
20

"Department" means the Department of Public Health.
21

"Director" means the Director of Public Health.
22

"Family member" means, with respect to a patient diagnosed
23
with a neurodegenerative disease, the patient's spouse, civil
24
union partner, or domestic partner; child (including a
25
biological, adopted, step, or foster child, a legal ward, or a
26
child for whom the patient or the individual stands in loco

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parentis); parent (including a biological, adoptive, step, or
2
foster parent, a legal guardian, or an individual who stood in
3
loco parentis to the patient or the individual when the
4
patient or the individual was a minor); sibling (including a
5
biological, adopted, step, or half-sibling); grandparent or
6
grandchild; in-law (including a mother-in-law, father-in-law,
7
son-in-law, daughter-in-law, brother-in-law, or
8
sister-in-law); or any other individual related to the patient
9
by blood or affinity whose close association with the patient
10
is the equivalent of a family relationship.
11

"Fund" means the Neurodegenerative Disease Research and
12
Program Fund under this Act.
13

"Neurodegenerative disease" means Parkinson's disease or
14
atypical parkinsonism, amyotrophic lateral sclerosis,
15
Huntington's disease, multiple sclerosis, and any related
16
neurodegenerative condition included by the Department by
17
rule.
18

"Neurodegenerative Disease Coordinator" or "Coordinator"
19
means the Department employee designated or hired by the
20
Director to administer and coordinate the implementation of
21
this Act.
22

"Plan" means the State plan to address neurodegenerative
23
diseases under this Act.
24

"Registry" means the voluntary statewide clinical and
25
population registry created under this Act.
26

"Stakeholders" means persons and entities with an interest

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in neurodegenerative disease policy, including persons living
2
with these conditions, caregivers, clinicians, researchers,
3
advocacy organizations, payers, and health systems.
4

"Qualified researcher" means an individual affiliated with
5
an Illinois-based academic institution, hospital, health
6
system, nonprofit research organization, or other entity
7
approved by the Department who seeks access to registry data
8
for a specific research purpose and who agrees to applicable
9
data use, privacy, and security requirements.

10

Section 15.
Neurodegenerative Disease Advisory Council.
11

(a) The Department shall convene a Neurodegenerative
12
Disease Advisory Council within the Department.
13

(b) The Advisory Council shall include the following
14
members:
15

(1) one or more members of the Senate appointed by the
16

President of the Senate;
17

(2) one or more members of the Senate appointed by the
18

Minority Leader of the Senate;
19

(3) one or more members of the House of
20

Representatives appointed by the Speaker of the House of
21

Representatives;
22

(4) one or more members of the House of
23

Representatives appointed by the Minority Leader of the
24

House of Representatives;
25

(5) one member appointed by the Governor representing

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the Governor's Office; and
2

(6) members appointed by the Governor as follows:
3

(A) at least 2 licensed neurologists with
4

expertise in the listed conditions;
5

(B) a palliative care clinician and a
6

rehabilitation clinician;
7

(C) representatives of patient advocacy
8

organizations for Parkinson's disease or atypical
9

parkinsonism, amyotrophic lateral sclerosis,
10

Huntington's disease, and multiple sclerosis;
11

(D) at least 2 persons living with a
12

neurodegenerative disease or the caregiver or family
13

member of someone with a neurodegenerative disease;
14

(E) a representative from academic or clinical
15

research institutions;
16

(F) a representative from a State Medicaid or
17

health payer program;
18

(G) a representative from the Department of
19

Financial and Professional Regulation with knowledge
20

of health care licensing; and
21

(H) other members designated by the Director to
22

ensure geographic diversity, racial and ethnic
23

diversity, and socioeconomic diversity.
24

(c) The Council shall operate as follows:
25

(1) Each member of the Council shall be appointed for
26

a 2-year term and until the member's successor is

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appointed. The Governor may stagger the members' terms to
2

ensure continuity in the performance of the Council's
3

responsibilities.
4

(2) The Advisory Council shall meet initially no later
5

than 90 days after all of the members of the Advisory
6

Council listed in subsection (b) of this Section are
7

appointed, and at least quarterly thereafter, at the times
8

and places in the State that the Advisory Council
9

designates.
10

(3) The Department shall provide administrative and
11

other support to the Advisory Council. The Department may
12

designate a third party to provide administrative support
13

in a paid or volunteer capacity. The Department may delay
14

the implementation of this subsection if the Department is
15

unable to find a third party to provide administrative
16

support to the Advisory Council.
17

(4) Members of the Advisory Council shall receive no
18

compensation for their participation but, subject to
19

appropriation, may be reimbursed by the Department of
20

Human Services for expenses in connection with their
21

participation, including travel, subject to the rules of
22

the appropriate travel control board.
23

(d) The Advisory Council shall have the following duties:
24

(1) advise on development, implementation, and
25

revision of the Plan;
26

(2) recommend best practices for clinical care, care

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coordination, surveillance, and workforce training;
2

(3) advise on the registry design, privacy, data
3

governance, and research priorities; and
4

(4) recommend public awareness strategies and
5

equity-focused outreach.
6

(e) The Advisory Council shall submit an Annual Report in
7
accordance with Section 50 of this Act.

8

Section 20.
Neurodegenerative Disease Coordinator.
9

(a) The Director shall designate or hire a full-time
10
Neurodegenerative Disease Coordinator within the Department.
11

(b) The Department shall implement and administer this Act
12
through the Coordinator, under the supervision of the
13
Director, except where this Act requires action by the
14
Director or the Advisory Council.
15

(c) The Coordinator shall, at a minimum:
16

(1) serve as the primary staff to the Advisory Council
17

and coordinate Advisory Council meetings, agendas,
18

materials, and stakeholder engagement;
19

(2) coordinate development, publication,
20

implementation, and periodic updating of the Plan,
21

including tracking performance measures and progress on
22

measurable objectives;
23

(3) administer and oversee the clinical and population
24

registry program, including provider outreach, enrollment
25

processes, data quality procedures, and coordination with

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information technology and security functions;
2

(4) develop and maintain the Department's public
3

website and dashboard required under this Act, consistent
4

with confidentiality requirements;
5

(5) coordinate interagency consultation and external
6

partnerships to implement this Act, including coordination
7

with relevant State agencies and federally supported
8

research centers;
9

(6) administer the Fund and grants program under this
10

Act, including development of grant criteria, solicitation
11

materials, scoring processes, and grant monitoring, in
12

consultation with the Council; and
13

(7) prepare drafts of the annual reports required
14

under this Act for Department review and submission.
15

(d) Except as authorized by the Department, nothing in
16
this Section authorizes the Coordinator to adopt rules,
17
execute intergovernmental agreements or memoranda of
18
understanding, or approve disclosure of confidential registry
19
information.
20

(e) Unless otherwise expressly provided in this Act, any
21
duty, power, or function assigned to the Director or the
22
Department under this Act may be carried out through the
23
Neurodegenerative Disease Coordinator or other Department
24
staff under the Director's supervision. Nothing in this
25
Section shall be construed to authorize the Coordinator to
26
adopt rules or execute intergovernmental agreements or

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memoranda of understanding, except as explicitly authorized by
2
the Director.

3

Section 25.
State plan to address neurodegenerative
4
diseases.
5

(a) Within 12 months after the effective date of this Act,
6
the Coordinator, acting through and under the supervision of
7
the Director, and with input from the Advisory Council, shall
8
develop and publish a State plan to address neurodegenerative
9
diseases.
10

(b) At a minimum, the Plan shall include:
11

(1) an epidemiologic assessment, including current
12

estimates of prevalence, incidence, and demographic
13

distribution for each condition and identification of data
14

gaps;
15

(2) goals and measurable objectives (short-term and
16

long-term) for prevention (where applicable), diagnosis,
17

care, research, surveillance, workforce, and support
18

services;
19

(3) strategy for improving early diagnosis and timely
20

access to specialists;
21

(4) care coordination and caregiver support
22

strategies;
23

(5) workforce development plan, including training for
24

neurologists, primary care clinicians, allied health
25

professionals, and long-term care staff;

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(6) a public awareness and education plan emphasizing
2

equity and culturally competent outreach;
3

(7) data and registry integration strategy, including
4

mechanisms for secure data sharing and research access;
5

(8) a research and innovation agenda with prioritized
6

areas for translational and clinical research;
7

(9) recommendations for sustainable financing,
8

including public and private funding streams and potential
9

creation of a dedicated research or program fund; and
10

(10) evaluation metrics and a schedule for monitoring,
11

reporting, and Plan updates at least every 5 years.
12

(c) The Plan shall include a prevention-oriented component
13
assessing environmental risk factors associated with
14
neurodegenerative diseases, including pesticides, solvents,
15
and other exposures, and shall identify education, voluntary,
16
and regulatory recommendations for reducing public and
17
occupational exposures in coordination with relevant State
18
agencies. In developing the environmental risk factors
19
component, the Council and the Department shall consult and
20
coordinate, as appropriate, with the Environmental Protection
21
Agency, the Department of Labor (including occupational safety
22
and health functions), the Department of Agriculture, the
23
Department of Natural Resources, and other relevant agencies
24
to promote scientific review, alignment with existing
25
authority, and stakeholder engagement. At a minimum, the
26
assessment shall include:

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(1) the current scientific evidence on environmental
2

risk factors associated with neurodegenerative diseases,
3

including, but not limited to, pesticides (such as
4

paraquat), solvents, and other high-risk exposures;
5

(2) implementation of information from consultation
6

with experts in toxicology, occupational health,
7

environmental health, and epidemiology, as well as
8

affected communities, in preparing assessments;
9

(3) identification of high-priority environmental
10

exposures that warrant State-level action, including
11

phase-out, substitution, or stricter regulation; and
12

(4) the recommended prevention, education, and
13

regulatory strategies to reduce public and occupational
14

exposures linked to neurodegenerative disease.
15

(d) Reporting under this Section shall be provided
16
according to the requirements under Section 50 of this Act.

17

Section 30.
Statewide clinical and population registry.
18

(a) The Department shall establish and maintain a
19
voluntary statewide clinical and population registry to
20
collect de-identified information and, with the patient's
21
informed consent, limited identifying information, to: (i)
22
improve understanding of burden imposed by neurodegenerative
23
diseases, natural history, and outcomes, (ii) facilitate
24
public health planning and service delivery, and (iii) support
25
research consistent with applicable privacy protections.

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(b) Participation in the registry shall be voluntary and
2
require informed consent consistent with State and federal
3
law. Providers may inform patients of the registry and assist
4
with enrollment consistent with privacy rules.
5

(c) A patient may decline to participate or may withdraw
6
consent at any time. Withdrawal shall apply prospectively and
7
shall not require the Department to retrieve or destroy
8
information already disclosed or used in accordance with this
9
Section and applicable data use agreements.
10

(d) A health care provider may inform patients of the
11
registry and may assist with enrollment and submission of
12
information to the Department in a manner consistent with the
13
federal Health Insurance Portability and Accountability Act of
14
1996 and other applicable State and federal privacy
15
requirements.
16

(e) Core data elements may include diagnosis, date of
17
diagnosis, demographic information, basic clinical staging or
18
severity metrics, key comorbidities, treatments, outcomes, and
19
patient-reported outcomes. The Director may add, modify, or
20
remove data elements by rule if any added elements are
21
reasonably necessary to accomplish the purposes of this
22
Section and are subject to the privacy and security safeguards
23
set forth in this Act.
24

(1) The identity of, and any information or
25

combination of facts that tends to lead to the identity
26

of, any patient whose condition or treatment is submitted

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to the registry is confidential, shall not be open to
2

public inspection or dissemination, and is exempt from
3

disclosure under Section 7 of the Freedom of Information
4

Act.
5

(2) Without limiting paragraph (1) of this subsection
6

(e), the following data elements, alone or in combination,
7

are confidential, not subject to public inspection or
8

dissemination, and exempt from disclosure under Section 7
9

of the Freedom of Information Act: name, social security
10

number, street address, email address, telephone number,
11

fax number, medical record number, certificate or license
12

number, reporting source (unless permitted by the
13

reporting facility), age (unless aggregated for 5 or more
14

years), zip code (unless aggregated for 5 or more years),
15

and diagnosis date (unless aggregated for one or more
16

years for the entire State or for 3 or more years for a
17

single county).
18

(3) The identity of any person claimed to be derived
19

from registry data is not admissible in evidence, and no
20

court shall compel production of registry information in
21

discovery if the court determines that the information
22

tends to lead to the identity of any person.
23

(4) Except as provided by rule and as part of an
24

epidemiologic investigation, an officer or employee of the
25

Department may interview a patient named in a report made
26

under this Section, or relatives of the patient, only with

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the express written consent of the patient or the
2

patient's legally authorized representative.
3

(5) The Department shall maintain administrative,
4

technical, and physical safeguards to protect registry
5

information and shall use and disclose registry
6

information only in compliance with the federal Health
7

Insurance Portability and Accountability Act of 1996 and
8

applicable State law.
9

(f) The Department shall maintain a written data
10
governance policy addressing data minimization, security
11
controls, retention, permitted uses, and review and approval
12
of requests for access.
13

(1) Registry data may be used to inform public health
14

planning, improve care delivery, support research, and
15

evaluate program outcomes.
16

(2) The Department may release de-identified
17

information and, as appropriate, limited data sets to
18

qualified researchers for specific research purposes
19

pursuant to procedures established by the Department,
20

including execution of a data use agreement and any
21

required human-subjects protections. Identifying
22

information shall not be released unless authorized by the
23

patient's informed consent or otherwise permitted by law.
24

(3) The Department shall adopt rules to implement this
25

Section, including standards for informed consent,
26

submission and validation of data, de-identification and

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aggregation, access review procedures, and safeguards for
2

confidential or privileged information.
3

(f) The Department shall maintain a public website for the
4
registry that includes:
5

(1) downloadable annual aggregate summaries on
6

incidence and prevalence of Parkinson's disease, atypical
7

parkinsonism, amyotrophic lateral sclerosis, Huntington's
8

disease, and multiple sclerosis;
9

(2) Advisory Council information; and
10

(3) additional resources as determined by the
11

Department.
12

(g) Reporting under this Section shall be provided
13
according to the requirements under Section 50 of this Act.
14

(h) A hospital, laboratory, other facility, or physician
15
and their officers, employees, and agents, shall not be held
16
civilly liable for the good-faith release of information to
17
the Department in accordance with this Section and rules
18
adopted under this Section.

19

Section 35.
Neurodegenerative Disease Research Support And
20
Grant Fund.
21

(a) Subject to appropriation, the Director shall establish
22
a Neurodegenerative Disease Research and Program Fund as a
23
special fund in the State treasury to make grants to public or
24
private not-for-profit entities for the purpose of conducting
25
neurodegenerative disease research. The Fund may receive

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gifts, grants, and other private contributions. The Department
2
shall deposit any private contributions received for the grant
3
program created pursuant to this Act in the Fund.
4

(b) Money in the Fund shall be used by the Department to
5
cover costs associated with this Act, including, but not
6
limited to, the following:
7

(1) salary and benefits for the full-time position of
8

the Coordinator within the Department;
9

(2) research grants and pilot projects focused on
10

diagnosis, treatment, care delivery, and health
11

disparities;
12

(3) infrastructure to enhance clinical trials capacity
13

and the registry analytics;
14

(4) workforce training and capacity building; and
15

(5) public awareness campaigns and caregiver supports.
16

(c) The Coordinator, in consultation with the Advisory
17
Council, shall develop transparent grant criteria prioritizing
18
scientific merit, potential for impact, equity, and
19
collaboration.
20

(d) Reporting under this Section shall be provided
21
according to the requirements under Section 50 of this Act.

22

Section 40.
Equity and rural access.
23

(a) In implementing this Act, the Department shall
24
consider disparities in diagnosis, care, participation, and
25
outcomes associated with race, ethnicity, income, rural

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1
residence, disability, language access, and other social
2
determinants of health and shall, to the extent practicable,
3
incorporate strategies to reduce such disparities in the Plan
4
and in programs administered under this Act.
5

(b) The Department shall use reasonable efforts to ensure
6
that outreach, enrollment opportunities, and program benefits
7
under this Act are accessible statewide, including in rural
8
areas and historically underserved communities.
9

(c) Targeted outreach and funding may be prioritized for
10
initiatives that demonstrably increase access, participation,
11
or outcomes in historically underserved communities or rural
12
areas, consistent with the objectives of the Plan and subject
13
to appropriation.

14

Section 45.
Coordination with federal programs, academic
15
centers, and private partners.
16

(a) The Director shall coordinate activities under this
17
Act with relevant federal agencies, federally supported
18
research centers, academic medical centers, institutions of
19
higher education, and private partners to leverage resources,
20
align initiatives, and avoid duplication.
21

(b) To the extent permitted by law, the Department may
22
enter into intergovernmental agreements, memoranda of
23
understanding, or other written agreements to facilitate
24
technical assistance, data sharing, and collaborative
25
research, provided that any sharing of information complies

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1
with federal Health Insurance Portability and Accountability
2
Act of 1996, applicable State privacy law, and the
3
confidentiality provisions of this Act and is subject to
4
appropriate data use or security terms.

5

Section 50.
Reporting.
6

(a) Beginning 12 months after the effective date of this
7
Act and annually thereafter, the Department, with input from
8
the Council, shall prepare, submit, and publish a single
9
consolidated Annual Report regarding implementation of this
10
Act. The Department shall submit the Annual Report to the
11
Governor and the General Assembly and shall post the Annual
12
Report on the Department's publicly available website, so long
13
as no confidential or identifying information is disclosed.
14

(b) At a minimum, the Annual Report shall include:
15

(1) plan implementation and progress toward measurable
16

objectives, including actions taken during the prior year
17

and progress on performance measures;
18

(2) registry summary required under Section 30 of this
19

Act in de-identified or aggregate form, including
20

enrollment totals, demographic summaries, and any
21

incidence or prevalence summaries feasible to report
22

consistent with confidentiality protections;
23

(3) care and access gaps identified in Illinois,
24

including barriers to diagnosis, specialty care,
25

supportive services, workforce capacity, and caregiver

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1

supports;
2

(4) a summary of disparities and actions taken to
3

improve access statewide, including rural access and
4

historically underserved communities;
5

(5) awards made from the Fund (if any), amounts,
6

recipients, purposes, and program outcomes or early
7

findings (if applicable);
8

(6) a summary of emerging scientific evidence,
9

exposure-reduction education strategies, and any
10

recommendations developed in consultation with relevant
11

State agencies;
12

(7) recommendations for legislative, regulatory, or
13

administrative action;
14

(8) the Plan required under Section 25 of this Act and
15

a draft Plan, which shall be made available for public
16

comment for at least 30 days prior to finalization; and
17

(9) reports required under Section 15 and Section 35
18

of this Act.
19

(c) The Department may maintain a public dashboard
20
providing regular updates on select indicators, such as
21
aggregate registry enrollment, grants awarded, and workforce
22
metrics, consistent with privacy protections and
23
confidentiality requirements under this Act.

24

Section 55.
Limitations.
Nothing in this Act shall be
25
construed to require insurance coverage beyond what is

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otherwise required by State or federal law, except as
2
expressly provided by a future Act of the General Assembly.

3

Section 60.
Rulemaking authority.
The Department may adopt
4
rules necessary to implement this Act, consistent with
5
administrative procedure requirements.

6

Section 90.
The State Finance Act is amended by adding
7
Section 5.1038 as follows:

8

(30 ILCS 105/5.1038 new)
9

Sec. 5.1038.
The Neurodegenerative Disease Research and
10
Program Fund.

11

Section 97.
Severability.
The provisions of this Act are
12
severable under Section 1.31 of the Statute on Statutes.

13

Section 99.
Effective date.
This Act takes effect upon
14
becoming law.

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