Meeting Reports

The National Institute of Neurological Disorders and Stroke (NINDS) held an open workshop on April 23 and 24, 2024 to evaluate the gap between the current understanding of Parkinson’s disease (PD) and the development of therapeutics for treating PD. Representatives from key stakeholder groups discussed strategies for leveraging research to bridge this gap. Sessions focused on PD heterogeneity, target validation, development of tools and resources to facilitate therapeutics development, biomarker discovery and use, similarities and differences with PD-adjacent neurodegenerative diseases, and best practices for accelerating the therapeutics development process. Here are some of the main takeaways from the workshop.

This meeting report summarizes the proceedings of the inaugural World Summit on Parkinson’s Disease, held 11-13 June 2025 in Fiesole, Italy. The Summit was co-sponsored by the Parkinson’s Foundation and the Fresco Parkinson Institute. Representatives from movement disorders centers, non-governmental organizations, and disease foundations came together to outline key global priority areas for policy-makers, clinicians, and people with Parkinson’s disease.

Novel therapies with the ability to delay disease progression are a gap in the care of people living with Parkinson disease (PD) today. Clinical outcomes assessments (COAs) that are sensitive to the earliest clinical changes in PD are deemed essential for a successful therapeutic development. To understand the current landscape of COAs use in clinical trials in PD and define priorities for future research in the field, a stakeholder roundtable meeting was held in November 2022. The current paper 1) proposes the collaborative development of patient-centric COAs that can adequately document the effectiveness of disease modification therapies in PD based on key priorities identified during this initial meeting, 2) summarizes the progress made in the subsequent 12 months, and 3) presents the deliverables expected in the near future. Key priorities include 1) the development of a consensus conceptual model of early PD experiences, 2) the adaptation of existing patient-reported outcomes (PROs), 3) the investigation of the role of observer-reported outcomes in addition to 4) enabling diversity in PD research and advocacy, 5) fostering data sharing, and 6) reaching consensus on a biological staging system for PD to drive the development of appropriate PROs for biologically defined populations.