Minnesota Parkinson's Research Trust Fund establishment

A bill for an act

relating to health; establishing the Minnesota Parkinson's Research Trust Fund;

requiring a report; appropriating money; proposing coding for new law in Minnesota

Statutes, chapter 144.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

Section 1.

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[144.0531] MINNESOTA PARKINSON'S RESEARCH TRUST FUND.

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Subdivision 1.

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Short title.

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This section may be cited as the "Minnesota Parkinson's

Research Trust Fund Act."

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Subd. 2.

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Purpose and findings.

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The legislature finds:

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(1) Parkinson's disease is a progressive neurological disorder affecting approximately

one million Americans, with an estimated 90,000 new diagnoses each year;

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(2) the financial burden of Parkinson's disease on individuals, families, and the health

care system is immense, with annual costs in the United States exceeding $52,000,000,000,

including medical expenses and lost income;

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(3) there is currently no cure for Parkinson's disease, and innovative research is essential

to advance therapies, improve patient outcomes, and alleviate the burden of Parkinson's

disease; and

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(4) caregivers of individuals with Parkinson's disease provide critical support, often at

significant personal and financial sacrifice.

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Subd. 3.

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Establishment of the fund.

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The Minnesota Parkinson's Research Trust Fund

is established in the state treasury. The trust fund is a special revenue fund and is not part

of the general fund. Money in the trust fund is held in trust and may be expended only as

provided in this section. The trust fund shall be used to support innovative research on

Parkinson's disease and provide caregiver assistance as provided in this section.

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Subd. 4.

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Purposes.

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The Minnesota Parkinson's Research Trust Fund is established to:

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(1) create and expedite innovation in research on Parkinson's disease and related disorders

to: (i) improve the health of residents of Minnesota; (ii) enhance the potential for a medical

or scientific breakthrough in research on Parkinson's disease and related disorders; and (iii)

enhance the research superiority of Minnesota regarding Parkinson's disease and related

disorders;

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(2) attract scientific researchers and create exceptional jobs in Minnesota; and

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(3) develop and implement a research plan to foster synergistic collaboration between

eligible institutions of higher education, institutional partners, and other grant recipients for

research on Parkinson's disease and related disorders.

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Subd. 5.

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Powers and duties.

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(a) The commissioner:

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(1) may award grants to institutions of learning, advanced medical research facilities,

public or private persons, and collaboratives in Minnesota that are involved in Parkinson's

research that furthers the purposes of this section, including:

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(i) implementation of a research plan;

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(ii) research, including translational and clinical research, into the causes of, means of

prevention of, and treatment and rehabilitation for Parkinson's disease and related disorders;

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(iii) research, including translational research, to develop therapies, protocols, medical

pharmaceuticals, or procedures for the substantial mitigation of the symptoms of Parkinson's

disease and related disorders;

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(iv) facilities, equipment, supplies, salaries, benefits, and other costs related to the

research of Parkinson's disease and related disorders; and

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(v) prevention programs and strategies to mitigate the detrimental health impacts of

Parkinson's disease and related disorders;

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(2) shall collaborate with relevant state agencies, coordinating councils, and consortiums

to enhance health care and research for Parkinson's disease and related disorders;

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(3) shall establish the appropriate standards and oversight bodies to ensure grant money

is used for the purposes of this section;

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(4) shall employ necessary staff to administer the trust fund;

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(5) shall manage grant accounting, grant monitoring, technical and document management

of the grant application review process, legal services, and compliance services;

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(6) shall monitor grant contracts authorized by this section and ensure each grant recipient

complies with the terms and conditions of the contract;

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(7) shall ensure all grant proposals comply with this section and rules adopted under

this chapter before the proposals are submitted to the oversight committee for approval;

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(8) shall monitor grant proposals for conflicts of interest; and

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(9) shall collaborate with the statewide research and clinical data registry for research

related to Parkinson's disease and related disorders.

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(b) The commissioner shall implement, monitor, and, as necessary, revise the research

plan.

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Subd. 6.

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Administration and oversight.

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(a) The commissioner of health shall establish

a Neurodegenerative Disease Advisory Council to oversee the administration of the trust

fund. The advisory council shall consist of representatives from:

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(1) leading research institutions in Minnesota;

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(2) Parkinson's advocacy organizations;

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(3) caregiver support groups; and

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(4) the medical community specializing in neurological diseases.

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(b) The advisory council shall establish guidelines for grant applications, selection

criteria, and reporting requirements to ensure transparency and accountability.

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Subd. 7.

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Reporting requirements.

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Recipients of grant funds shall submit an annual

report to the commissioner detailing:

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(1) the progress of funded research;

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(2) outcomes and measurable impacts of caregiver support programs; and

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(3) any additional recommendations for improving the program's effectiveness.

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Subd. 8.

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Annual report.

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(a) No later than January 31 of each year, the commissioner

shall prepare and submit to the chairs and ranking minority members of the legislative

committees with primary jurisdiction over health finance a report on:

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(1) the trust fund's grants under this section;

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(2) a list of recipients of grants awarded during the preceding state fiscal year and the

grant amount awarded to each recipient;

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(3) any research accomplishments a grant recipient or the recipient's partners achieved

during the preceding state fiscal year;

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(4) an assessment of the progress of grant recipients;

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(5) a statement of strategic research plans;

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(6) an estimate of the financial cost to Minnesota of Parkinson's disease and related

disorders during the most recent state fiscal year for which data is available, including the

amounts Minnesota spent related to Parkinson's disease and related disorders under Medicaid,

the Teacher Retirement System of Minnesota, and the Employees Retirement System of

Minnesota; and

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(7) a statement of grant's compliance program activities, including any recommendations

identified through the activities.

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(b) The commissioner must publish the report on the department's website.

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Subd. 9.

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State plan to address neurodegenerative diseases.

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(a) Within 12 months of

the effective date of this act, the commissioner, with input from the council and stakeholders,

shall develop and publish a state plan to address neurodegenerative diseases.

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(b) At a minimum, the plan shall include:

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(1) current estimates of prevalence, incidence, and demographic distribution for each

condition and identification of data gaps;

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(2) a determination of objectives that include prevention, diagnosis, care, research,

surveillance, workforce, and support services;

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(3) strategies for improving early diagnosis and timely access to specialists;

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(4) care coordination and caregiver support strategies;

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(5) a workforce development plan, including training for neurologists, primary care

clinicians, allied health professionals, and long-term care staff;

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(6) a public awareness and education plan emphasizing equity and culturally competent

outreach;

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(7) a data and registry integration strategy, including mechanisms for secure data sharing

and research access;

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(8) a research and innovation agenda with prioritized areas for translational and clinical

research;

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(9) recommendations for sustainable financing, including public and private funding

streams and potential creation of a dedicated research or program fund; and

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(10) evaluation metrics and a schedule for monitoring, reporting, and planning updates

at least every five years.

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(c) The draft plan shall be made available for public comment for at least 30 days before

finalization.

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Subd. 10.

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Coordination of activities.

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(a) The commissioner shall coordinate activities

under this section with relevant federal agencies, federally supported research centers,

academic medical centers, and private sector partners to leverage resources and avoid

duplication.

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(b) To the extent permitted by law, the commissioner may enter into memoranda of

understanding to facilitate data sharing and collaborative research.

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Subd. 11.

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Protections and limitations.

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(a) Nothing in this section shall be construed to

require insurance coverage beyond what is otherwise required by state or federal law.

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(b) Participation in the registry is voluntary, and no person shall be denied services or

benefits for refusing to enroll.

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(c) Data collected under this section shall not be used for nonresearch law enforcement

or discriminatory purposes.

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Subd. 12.

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Rulemaking authority.

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The commissioner may adopt rules or regulations

necessary to implement this section.

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Subd. 13.

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Severability.

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If any provision or application of this section is held invalid,

the remainder shall continue in effect.

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EFFECTIVE DATE.

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This section is effective October 1, 2026.

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Sec. 2.
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APPROPRIATION AND ALLOCATION OF FUNDS.
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(a) $25,000,000 in fiscal year 2027 is appropriated from the general fund to the

commissioner of health to implement Minnesota Statutes, section 144.0531.

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(b) Of the amount in paragraph (a):

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(1) $20,000,000 shall be awarded through competitive grants to state universities, research

institutions, and medical centers actively engaged in Parkinson's research with priority given

to innovative therapies and projects aimed at finding a cure;

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(2) $3,000,000 shall be used to establish and expand programs that support caregivers

of individuals living with Parkinson's disease, including respite care, training, and mental

health resources; and

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(3) $2,000,000 shall be used to establish a Neurodegenerative Disease Advisory Council

that shall develop and publish a state plan to address neurodegenerative diseases.

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EFFECTIVE DATE.

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This section is effective July 1, 2026.

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