Purpose and findings

• Creates the Minnesota Parkinsons Research Trust Fund to support innovative research on Parkinsons disease and to provide caregiver assistance.
• Highlights the large human and financial burden of Parkinsons disease in the U.S. and the need for new therapies, improved patient outcomes, and support for families and caregivers.

Establishment of the fund

• The Minnesota Parkinsons Research Trust Fund is established in the state treasury as a special revenue fund (not part of the general fund).
• Money in the fund is held in trust and can be spent only for the purposes defined in the act.

Purposes

• Create and speed up innovation in Parkinsons research and related disorders.
• Improve the health of Minnesotans and increase the chances of breakthroughs in research and treatment.
• Attract scientists and create high-quality jobs in Minnesota.
• Develop and carry out a research plan to promote collaboration among colleges, universities, research facilities, and other grant recipients.

Powers and duties of the commissioner

• The commissioner of health may award grants to colleges, universities, medical/research facilities, public or private entities, and collaboratives involved in Parkinsons research.
• Grants may support:
  • Research plans, translational and clinical research on causes, prevention, treatment, and rehabilitation.
  • Development of therapies, protocols, medications, or procedures to significantly reduce Parkinsons symptoms.
  • Facilities, equipment, supplies, salaries, and other costs for Parkinsons research.
  • Prevention programs and strategies to lessen health impacts.
• The commissioner must coordinate with state agencies and relevant councils, set standards and oversight for grant money, hire staff to administer the program, monitor contracts, review applications, manage conflicts of interest, and ensure compliance.

Administration and oversight

• Establishes a Neurodegenerative Disease Advisory Council to oversee the trust fund.
• Council composition includes leaders from Minnesota research institutions, Parkinsons advocacy groups, caregiver support groups, and the medical community specializing in neurological diseases.
• The council sets grant guidelines, selection criteria, and reporting requirements to ensure transparency and accountability.

Reporting requirements

• Grant recipients must submit annual reports detailing research progress, caregiver program outcomes, and recommendations to improve program effectiveness.

Annual reporting to the Legislature

• By January 31 each year, the commissioner must report to legislative health committees with:
  • A list of grant recipients and amounts awarded in the prior fiscal year.
  • Research accomplishments and progress of grant recipients.
  • Strategic research plans and recommendations.
  • An estimate of Minnesota’s annual costs related to Parkinsons disease and related disorders (including spending under Medicaid and state employee retirement systems).
  • Compliance program activities and recommendations.
• The commissioner must publish this report on the department’s website.

State plan to address neurodegenerative diseases

• Within 12 months of the act’s effective date, the commissioner (with input from the council and stakeholders) must develop and publish a state plan.
• The plan must cover:
  • Prevalence, incidence, and demographics for each condition, plus data gaps.
  • Objectives across prevention, diagnosis, care, research, surveillance, workforce development, and support services.
  • Strategies for earlier diagnosis, access to specialists, care coordination, and caregiver support.
  • Workforce development for neurologists, primary care clinicians, allied health professionals, and long-term care staff.
  • Public awareness and culturally competent outreach.
  • Data and registry integration, with secure data sharing for research.
  • A research and innovation agenda with prioritized translational and clinical research areas.
  • Sustainable financing options and potential dedicated funding.
  • Evaluation metrics and a planning updates schedule (at least every five years).
• The draft plan must be open for at least 30 days of public comment before finalization.

Coordination and data sharing

• The commissioner must coordinate activities with federal agencies, federally supported research centers, academic medical centers, and private partners to maximize resources and avoid duplication.
• The commissioner may enter memoranda of understanding to facilitate data sharing and collaboration, as permitted by law.

Protections and limitations

• No provision requires insurance coverage beyond what state or federal law already requires.
• Participation in the Parkinsons registry is voluntary; refusing to enroll shall not result in denial of services or benefits.
• Data collected under the act may only be used for research and cannot be used for nonresearch purposes, law enforcement, or discriminatory uses.

Rulemaking authority and severability

• The commissioner may adopt rules necessary to implement the act.
• If any part of the act is found invalid, the rest remains in effect.

Significant changes introduced by the bill

• Establishes a new dedicated funding mechanism: the Minnesota Parkinsons Research Trust Fund (a special revenue fund in the state treasury).
• Creates a formal governance and oversight structure, including a Neurodegenerative Disease Advisory Council.
• Authorizes a comprehensive grant program to support Parkinsons research and caregiver initiatives, with requirements for transparency and accountability.
• Requires the development of a state plan addressing neurodegenerative diseases, with detailed objectives, data goals, and financing strategies.
• Introduces coordinated data sharing and collaboration efforts across state and federal entities and research partners, with strong protections for privacy and non-discrimination.

Relevant Terms - Minnesota Parkinsons Research Trust Fund - Parkinsons disease - caregiver assistance / caregiver support - grants / grant program - translational research - clinical research - causes, prevention, treatment, rehabilitation - therapies, protocols, pharmaceuticals - data registry / research registry - neurodegenerative diseases - Neurodegenerative Disease Advisory Council - state plan - prevalence / incidence - eligibility: institutions of higher education, medical research facilities, public/private entities - collaboration / coordination with state and federal partners - transparency / accountability - reporting requirements - public comment - special revenue fund / state treasury - compliance / conflicts of interest - data sharing / data privacy - rulemaking authority - severability