Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act

The Project's stated goals expanded from 'prevent and cure' to 'prevent, diagnose, treat, and cure,' making diagnosis and treatment explicit federal priorities throughout the bill.

Advisory Council federal membership added the Agency for Healthcare Research and Quality, the National Science Foundation, and the Office of the Surgeon General; removed NINDS and NIEHS as separate line items (subsumed under NIH).

The Advisory Council annual report now includes a recommendation to improve quality of care for Parkinson's beneficiaries under Medicare and Medicaid, and a recommendation to research underlying factors contributing to Parkinson's - both new items not in the introduced version.

The definition of Parkinson's removed 'Lewy body disease' from the enumerated list of related disorders and changed 'including, but not limited to' to simply 'including,' while adding the word 'all' before 'other neurodegenerative Parkinsonisms.'

A new activity requires the Secretary to collaborate with other entities to prevent duplication of existing research activities for related disorders.

Advisory Council membership changed from 'diverse and inclusive representatives' to 'experts, to be appointed by the Secretary, who collectively are from various backgrounds and perspectives,' giving the Secretary more discretion over appointments.

The information provision now requires an estimate of current Federal investment in Parkinson's, and separately, if applicable, an estimate of additional investment necessary to achieve prevention, diagnosis, treatment, and cure.

Non-Federal Advisory Council members must now include representatives of minority communities, communities disproportionately affected by Parkinson's, and communities underrepresented in Parkinson's research.

Advisory Council meetings changed from permanently quarterly to quarterly only during the first 2 years, then at the Secretary's discretion. The research meeting changed from biannual to annual. The Advisory Council report changed from biannual to annual.

The separate Secretary biannual report (former subsection g) was eliminated entirely. Its content was largely folded into the Advisory Council annual report, reducing the number of distinct reporting obligations.

Data sharing requirements were renamed 'information sharing,' broadened to cover every Federal department and agency (not just HHS and outside-HHS agencies), and tied specifically to enabling the Advisory Council report rather than a separate Secretary report.