On 23–24 September, EPND partners gathered in Split, Croatia, for the project’s final Annual Meeting. Bringing together 28 partner organisations, this public–private partnership has spent five years developing infrastructure for sharing data and biosamples to advance neurodegenerative disease research. Partners reviewed scientific outputs, shared practical lessons and discussed how to build on these achievements beyond the funded project.

The meeting kicked off with opening remarks from EPND co-leads Tony Brookes (University of Leicester), Phil Scordis (UCB), and Niranjan Bose (Gates Ventures), who welcomed partners to Split and reflected on the project’s five-year journey. They also welcomed Elisabetta Vaudano, Principal Scientific Manager at the Innovative Health Initiative, as well as members of EPND's External Stakeholder Advisory Board, Miia Kivipelto (Karolinska Institutet) and Magali Haas (Psilera). Acknowledging the challenges encountered along the way, they highlighted how partners’ shared commitment, collaboration and willingness to adapt had enabled EPND to deliver a valuable platform, and resources, for the research community.

Developing the EPND Hub

The meeting showcased the EPND Hub, a unified gateway for discovering and requesting research datasets and biosample collections, with secure analysis supported through AD Workbench. Partners demonstrated how connections with external repositories enable researchers to discover and access resources while data remain at the contributing institution. Discussions also explored tools to reduce the manual work involved in describing datasets, clearer information on conditions for reuse, and preparations for interoperability with the European Health Data Space.

Researchers and cohort owners are encouraged to explore the EPND Hub, discover available datasets and biosample collections, and submit access requests linked to their own research projects.

Connecting cohorts and enabling access

Partners reported that over 110 studies are now listed, spanning 27 countries and 12 disease areas, enabling discovery of 120+ datasets and 38 biosample collections. Presentations highlighted the hands-on support behind these connections, from preparing metadata to navigating institutional approvals. Lessons included the importance of early legal engagement, standardised clinical data templates and realistic timelines for sharing samples and data.

Advancing biomarker research

The case study presentations highlighted both scientific value and opportunities for further research. The amyloid, tau, neurodegeneration and complement datasets are already being used in 13 partner research projects. Microbiome results illustrated the value of EPND in enabling novel findings to be validated across cohorts and analytical techniques. Partners also discussed the forthcoming proteomics dataset and its potential to be linked with other EPND datasets, alongside ongoing collection of digital and clinical measures that will continue beyond the project.

Sharing resources and sustaining EPND's achievements

Partners reviewed the use of EPND’s standard operating procedures for biosample collection and handling, identifying further needs for guidance on biomarker stability and emerging technologies. The recently launched Lay Glossary, developed with people living with neurodegenerative diseases and carers, was presented as a living resource open to further contributions. Discussions also highlighted reusable ethical and legal guidance and lessons from the case studies.

The final section of the meeting addressed the crucial topic of sustainability, which was the subject of a dedicated workpackage that has been working from day 1 of EPND, embedding sustainability by design. Partners explored how combinations of platform services, access management, guidance and analysis support could meet the needs of future research initiatives. Maintaining resources, responding to user feedback and tracking their reuse were central themes.

Reflections from the External Stakeholder Advisory Board

The Annual Meeting was followed immediately by the final meeting of EPND’s External Stakeholder Advisory Board (ESAB). Members congratulated the consortium on its achievements and shared valuable perspectives on future partnerships, opportunities for AI-assisted data discovery, and translating research outputs into patient benefit. We extend our warmest thanks to all ESAB members for their generous commitment of time and expertise throughout the past five years. Their thoughtful guidance, constructive challenge and encouragement have helped shape EPND’s development and strengthen the foundations for its future.

Thank you to all partners, advisors and contributors who have shaped EPND. Stay tuned for an exciting development supporting its sustainability, coming later in October!