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), we are building a platform and 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 for clinical data and samples to be discovered and shared at scale.

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 disease by removing barriers to data sharing and collaboration. With a commitment to data privacy, we can connect researchers to the data and samples 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 to build a scalable and self-sustainable platform that will house a wealth of high-quality clinical and biological samples for discovery and analysis. Our primary goal is to make these valuable resources 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 brings together 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 will accelerate collective efforts by building on existing initiatives, removing traditional barriers to collaboration and discovery, and integrating research cohorts to make them discoverable, enabling information, sample, and data exchange.

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

EPND will bring together existing cohorts and initiatives from public and private sectors to build a scalable and sustainable platform, providing a single point of access for data sharing, discovery, and analysis. The Alzheimer's Disease Data Initiative’s (ADDI) AD Workbench will serve as the starting infrastructure for EPND. EPND will build a European network for access to samples and data from over 60 cohorts, 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 will develop best-in-class policies 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 will be incorporated back into the platform to drive continued data access and innovation, enabling researchers to discover data and samples to answer new research questions.

Methodology

In collaboration with European research infrastructures and partnering with cohorts across Europe, EPND will create a community of data and sample providers and users united by a common goal to change the future of neurodegenerative disease. The project includes eight work packages (WPs), each co-led by members of the public and private consortia, which will be executed over five years. The goal is to not only establish and validate the platform, but also build a vibrant community.

Establish the EPND platform

WP1 will establish EPND as the European node of the AD Workbench, expanding on the existing network of shared data and resources.

Legal and ethical aspects

WP2 will provide a governance framework composed of legal, ethical, and regulatory principles to guide the responsible discovery and sharing of data and samples and ensure participating cohorts are in compliance with these principles and best practices.

Standardised operating procedures

WP3 will identify and evaluate existing standards for data and biosample collection, as well as develop novel standards to create standardised operating procedures for EPND users and contributors.

Cohort interactions

WP4 will onboard and integrate the clinical datasets and biosamples from over 60 cohorts, as well as work to identify and onboard additional cohorts.

Case studies

WP5 will use case studies to perform analyses to discover and validate biomarkers, while also progressively testing the different components of the platform for accuracy, effectiveness, and interoperability.

Stakeholder involvement & communication

WP6 will develop an integrated framework for stakeholder engagement, coordinating consultations, interviews, and surveys. Bidirectional communication will ensure the EPND platform and outputs are informed and driven by feedback from key stakeholders in the neurodegenerative disease and research community.

Sustainability

WP7 is devoted to ensuring the resources and services designed in EPND will be sustained and advanced beyond the initial five years of the program.

Management and overall coordination

WP8 is focused on efficient management and coordination of the entire EPND project.

FAQs

What neurodegenerative diseases will be included in EPND?

EPND will host and provide access to data and samples for 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.

What is the cohort catalogue?

The EPND cohort catalogue includes an extensive list of European cohorts across the neurodegenerative spectrum. This catalogue has over 60 cohorts with metadata on participants, biosamples, imaging, and cognitive data.

EPND aims to accelerate research in neurodegenerative diseases and is starting this effort by providing a catalogue of these cohorts in one place. Users can search and filter cohorts by metadata characteristics to discover cohorts that could be useful in their own research, and connect with cohort owners to kick-start new collaborations.

How can data and samples collected in a clinical study be shared with EPND?

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 ADDI? What is the AD Workbench?

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

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