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, while removing barriers to collaboration and discovery.

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.

We’re joining forces, across disciplines, to integrate and build on existing initiatives, while removing barriers to collaboration and discovery. 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 that can prevent or modify the progression of neurodegenerative diseases that affect millions of people in Europe. Despite robust research efforts, and significant amounts of data and samples, there are few secure, accessible ways for clinical data and samples to be discovered and shared at the scale needed to make critical progress in the diagnosis, treatment, and prevention of these diseases.

More than 9 million people are living with neurodegenerative disease in Europe

€130

An estimated €130 billion per year in medical and care related costs

2050

The prevalence of dementia in Europe is 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

Accelerating collective progress

Without a collective effort, research on neurodegenerative diseases will stagnate. EPND brings together a multidisciplinary group of researchers, data scientists, and healthcare professionals. We will accelerate collective efforts by integrating existing initiatives and removing traditional barriers to collaboration and discovery.

In establishing the EPND platform, we will provide governance, good practice, and guides for users from across disciplines, validate and fine-tune functionality of the platform with case studies, and build the platform with a sustainability-by-design approach to ensure a cost-effective, value-added platform for the global research community.

Creating a single point of access for data sharing

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, opening unprecedented distribution for essential research.

Leading responsible data stewardship

EPND will honour patient contributions, data security, and privacy by stewarding data responsibly, with compliance to GDPR at the forefront of the initiative. EPND will follow and establish best-in-class policies and procedures to ensure data can be shared effectively without compromising individual privacy.

Methodology

In collaboration with European Research Infrastructure Consortia 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.

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.

What is a biomarker?

A biomarker is a characteristic of the body that can be measured, like blood pressure or cholesterol level. Because they provide information about what is happening inside the body, biomarkers can help to detect, diagnose or monitor the progression of disease. Biomarkers also play an important role in the science of developing treatments for neurodegenerative diseases.

What is ADDI?

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.

What is the AD Workbench?

The Alzheimer’s Disease 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.