Over the years, a massive amount of data and biological samples related to neurodegenerative diseases has been collected in Europe. But these resources have been scattered across studies, institutions and countries, making them near impossible for researchers to find, access, compare and use.
Making this data harmonised and accessible to researchers could open up huge potential to find new biomarkers and targets for drug candidates that could unlock breakthroughs in understanding and treatment of brain diseases. Neurological diseases are the leading cause of disability in Europe, affecting 1 in 3 people, and they cost the European economy €368 billion every year.
The European Platform for Neurodegenerative Diseases (EPND) project sought to connect the scattered data, along with biosamples, research outputs and analyses, under one roof – the EPND Hub. The Hub now connects more than 110 research studies, 130 datasets and 38 biosample collections across more than a dozen of the most prevalent neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease and amyotropic lateral sclerosis (ALS).
The infrastructure underpinning the Hub is the AD Data Initiative’s AD Workbench, which provides a secure and cloud-based offering, interoperability with ten other platforms as well as a growing range of data analysis tools. The EPND Hub tackled key challenges related to data sharing thanks to a federated yet flexible approach, meaning that the tool can grow and adapt as needed.
“Rather than relying on a single data model or one set of sharing conditions, EPND employs a flexible approach to data sharing, thereby respecting data providers and users preferences and includes centralised and federated approaches. This flexibility will allow the infrastructure to adapt as research needs and technologies evolve.”
Anthony Brookes, Professor of Genomics and Health Data Science at the University of Leicester and EPND co-Lead.
To show how the EPND Hub could serve researchers, four case studies were conducted spanning Alzheimer’s Disease, Parkinson’s Disease and dementia with Lewy bodies, utilising samples and clinical data from over 1000 participants across 15 European cohorts. The case studies resulted in new datasets that in turn are now being shared with the community via the Hub.
However, as funding from the Innovative Medicines Initiative drew to a close, EPND had to define how to ensure that the Hub would continue to function.
“Sustainability is not simply about keeping the lights on after a project ends,”
Phil Scordis, Head of Data Science and Analytics at UCB and EPND co-Lead.
The project partners decided to launch EPND+, a non-profit organisation based out of Ireland that will operate and continue to develop the EPND Hub, so that it evolves and provides a valuable and long-lasting resource that could pave the way towards an eventual cure for dementia and other neurodegenerative diseases. EPND+ was launched during the IHI Forum 2026 by Niranjan Bose, Managing Director for Health and Life Sciences at Gates Ventures and EPND co-Lead.
“Over the last decade, I have seen how breaking down silos and giving researchers access to the right data, tools and collaborators can accelerate innovation,” he said.
“EPND+ gives us an opportunity to preserve what we have built, while applying these solutions, expertise and lessons to new research questions, disease areas and collaborations,” said Scordis.
"Together, the consortium built a trusted, shared platform to facilitate discoverability and sharing of samples and data from more than 110 studies."
Niranjan Bose, Managing Director for Health and Life Sciences at Gates Ventures and EPND co-Lead
The unique structure of the public-private partnership under the Innovative Medicines Initiative allowed for a data sharing structure that would otherwise have been impossible.
“Earlier IMI projects like EMIF, EPAD and AMYPAD had laid foundations ready to be connected into one Europe-based framework. EPND brought 29 public and private partners from 19 countries to one table,” said Bose.
“Each contributed something the others needed: academic rigour, datasets, industry investment and technical expertise, and patients’ trust that their data would drive real progress. Together, the consortium built a trusted, shared platform to facilitate discoverability and sharing of samples and data from more than 110 studies.”
All of this will culminate in a better outlook for patients.
Niklas Blomberg, IHI’s executive director, said that EPND+ “demonstrates that public-private partnerships can create durable resources for European research, enabling new collaborations, advancing novel science and, ultimately, delivering greater impact for patients.”
The European Platform for Neurodegenerative Diseases project was supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.