About EPND

Working together to accelerate biomarker discovery, development, and validation across Europe and the world

We’re joining forces across disciplines to integrate and build on existing initiatives, creating new pathways for collaborative research.

EPND is a consortium of multidisciplinary educators, clinicians, researchers, and scientists committed to revolutionising scientific breakthroughs in the effort to diagnose, treat, and prevent neurodegenerative diseases.

With support from the Innovative Medicines Initiative (IMI), our platform is uniting the neurodegenerative disease research community to fuel new discoveries in the field.

A need for novel solutions

Currently, there is a lack of treatments to prevent or modify the progression of neurodegenerative diseases that affect millions of people in Europe. Critical progress in the diagnosis, treatment, and prevention of neurodegenerative diseases is challenged by longstanding barriers to collaboration across the research process. Despite robust research efforts and significant amounts of data and samples, there are few secure, accessible, and sustainable ways to discover and share clinical data and biosamples at scale. Without a collective effort, research on neurodegenerative diseases will stall.

The EPND consortium accelerates collective efforts by removing traditional barriers to collaboration and discovery and integrating research cohorts to facilitate information, biosample, and data exchange.

10M

More than 10 million people in the EU live with a neurodegenerative disease

395B

An estimated €395 billion was spent on dementia-related care in 2019

2050

Alzheimer’s and related dementias are set to double by 2050

Together, we can change the future of neurodegenerative diseases

Our mission is to change the future of neurodegenerative diseases by removing barriers to data sharing and collaboration. With a commitment to data privacy, we can connect researchers to the data and biosamples they need to hasten the discovery of crucial biomarkers, and advancement of new treatments.

Our Goal

We’re bringing together a multidisciplinary consortium from the public and private sectors using a scalable and self-sustainable platform that houses a wealth of high-quality clinical and biological samples for discovery and analysis. These valuable resources are easy to access and utilise for breakthrough discoveries in the research, diagnosis, and treatment of neurodegenerative diseases.

Our Objectives

Facilitate connection and multidisciplinary collaboration for a global community of users

Without a collective effort, research on neurodegenerative diseases will stall. EPND unites leaders from academic research, the pharmaceutical industry, and data science in a multidisciplinary, public-private partnership for a diverse community in Europe and beyond. We accelerate collective efforts by building on existing initiatives, removing traditional barriers to collaboration and discovery, and integrating research studies to make them discoverable, enabling information, biosample, and data exchange.

Establish a data- and biosample-sharing platform to enable discovery and analysis

EPND utilises a scalable and sustainable platform, providing a single point of access for data sharing, discovery, and analysis. The Alzheimer's Disease Data Initiative’s AD Workbench serves as the starting infrastructure for EPND. EPND built a European network for access to biosamples and data from more than 65 studies, providing governance and guidance for users across disciplines, priming unprecedented discovery and sharing for essential research.

Accelerate biomarker discovery through large-scale analysis and innovation

Large-scale biomarker research holds the key to developing more accurate diagnostics for neurodegenerative diseases. EPND develops best-in-class policies and procedures for ethical data stewardship with GDPR compliance at the forefront, facilitating large-scale analyses by reducing the burden on participating cohorts and data contributors. Learnings and data generated from EPND case studies are incorporated back into the platform to drive continued data access and innovation, enabling researchers to discover data and biosamples to answer new research questions.

Methodology

Eight work packages (WPs) are shaping the first five years of EPND, each co-led by public and private members of the EPND Consortium. These WPs establish and validate the platform while building a vibrant community of data and sample users and contributors.

Establish the EPND platform

WP1 establishes EPND as the European node of the AD Workbench and expands on the existing network of shared data and resources with the EPND Catalogue.

Legal and ethical aspects

WP2 builds a governance framework composed of legal, ethical, and regulatory principles to guide the responsible discovery and sharing of data and biosamples, protecting patient privacy, and ensures participating cohorts are in compliance with these principles and best practices.

Standardised operating procedures

WP3 identifies and evaluates existing standards for data and biosample collection, and develops novel standards to create standardised operating procedures for EPND users and contributors.

Cohort interactions

WP4 onboards and integrates clinical datasets and biosamples from more than 75 studies. EPND continues to identify and engage additional cohorts.

Case studies

WP5 conducts case studies on the discovery and validation of biomarkers, while also progressively testing the different components of the platform for accuracy, effectiveness, and interoperability. Results are published in scientific journals and online reports.

Stakeholder involvement & communication

WP6 develops an integrated framework for stakeholder engagement and coordinates consultations, interviews, and surveys. Bidirectional communication ensures the EPND platform and outputs are informed by feedback from key stakeholders in the neurodegenerative disease and research community.

Sustainability

WP7 ensures the resources and services designed in EPND will be sustained and advanced beyond the initial five years of the program (2021-2026).

Management and overall coordination

WP8 focuses on continued efficient management and coordination of the entire EPND project.

FAQs

What is the EPND Catalogue?

The EPND Catalogue is a first-of-its-kind, open, and accessible database enabling discoverability and access to more than 80 neurodegenerative disease cohorts from 17+ European countries. The EPND Catalogue includes a wealth of study metadata, covering 12 disease areas and including more than 260,000 research participants.

The EPND Catalogue enables researchers to discover information about datasets and biosample collections from European cohorts, maximizing progress in developing new diagnostics, treatments, and biomarkers.

What’s new in the EPND Catalogue?

We’re regularly improving and updating the Catalogue to increase the visibility and discoverability of studies. The enhanced EPND Catalogue, launched in March 2024, now includes enhanced study details and search functionalities.

Make your studies discoverable on the EPND Catalogue to increase your potential for research collaborations or citations of datasets, funding for biosample access and sharing, and opportunities for collaborative grants. Users can also provide additional study information, including metadata, datasets, biosamples, and use conditions to increase the potential for discoverability and utilization of invaluable data and samples.

What neurodegenerative diseases are included in EPND?

EPND covers all neurodegenerative diseases, from highly prevalent disorders such as Alzheimer’s and Parkinson’s to rarer diseases like multiple system atrophy and Huntington’s disease.

How can EPND support sharing of data or biosamples collected in a clinical study?

Send an email to participate@epnd.org and we will share with you the information you need to get started.

What kind of samples will EPND have?

EPND expects to eventually have a variety of sample types, including plasma, serum, DNA, CSF, saliva, urine, and stool.

Who can access the data and samples on EPND?

Access will be granted to qualified researchers, drug developers, and scientists who have been authorised by EPND. This feature is expected to be enabled in 2023.

What is the Alzheimer's Disease Data Initiative? What is the AD Workbench?

The Alzheimer’s Disease Data Initiative (AD Data Initiative) is a US-based medical research organisation dedicated to advancing scientific breakthroughs in treating Alzheimer’s disease and related dementias through open data and global collaborations.

The AD Workbench is an online tool from the AD Data Initiative that makes it possible for researchers around the world to share data, resources, and tools. It is open, global, free, and easy to use. The AD Workbench powers EPND’s platform, which hosts a community of practice for neurodegenerative disease research in Europe.