This deliverable outlines EPND’s approach to engaging key stakeholders in the design and development of a platform for sharing neurodegeneration research data and biosamples. The deliverable is separated into two sections, focusing on two workstreams: stakeholder engagement to foster collaboration across disciplines, and public involvement, involving people affected by neurodegenerative diseases in the research process.

Part 1, led by DZNE, focuses on enabling transdisciplinary collaboration (TDC) across researchers, clinicians, and data experts. Based on literature review and internal consultation across multiple work packages, the team identified challenges and developed tools to support collaboration. These include a modular Glossary to improve shared understanding, and a review of how Target Product Profiles (TPPs) can be adapted to support project planning and communication. Preliminary indicators were also proposed to monitor stakeholder engagement over time. EPND also conducted a preliminary feasibility assessment for citizen science, focusing on ethical and legal considerations of involving citizens beyond their roles as patients or study participants.

Part 2, led by Alzheimer Europe and supported by the Spanish Parkinson’s Federation, describes a Public Involvement (PI) approach that draws on lived experience to enhance research. This work focuses on respectful, inclusive communication and recognises the value of the insight that people with Alzheimer’s, Parkinson’s, and other conditions can bring to the research process.

For more information, find the full “Roadmap and tools for stakeholder engagement” here.