EPND

Millions of people worldwide live with neurodegenerative diseases like Alzheimer’s and Parkinson’s, yet there are very few treatment options for those affected. One challenge facing researchers in this area is the lack of biological markers (biomarkers) that could be used to identify people in the very earliest stages of their disease; measure the effects of a potential treatment; or uncover clusters of patients who share biomarker patterns in common and may respond well to a specific treatment.

Over the years, researchers worldwide have amassed a wealth of biological samples and data that could yield vital information on biomarkers relating to neurodegenerative diseases. However, finding out what samples and data are available, then accessing and using them, is far from easy. Moreover, the rules and protocols for collecting, storing and sharing samples and data vary widely.

The aim of EPND is to establish a collaborative platform that would link up existing European research infrastructures and so speed up the discovery of new biomarkers for neurodegenerative diseases.

EPND will build a secure platform via a European node on the AD Workbench of the Alzheimer’s Disease Data Initiative (ADDI). The AD Workbench is a data platform that allows researchers to share, access and analyse data. EPND will adapt the AD Workbench to support things like data storage, harmonisation and analysis; sample storage; and more. Sample and data discovery tools will be connected to a network of over 60 cohorts with Alzheimer’s disease, Parkinson’s disease, and related disorders. Between them, these cohorts will facilitate access to samples and data from over 120 000 research participants.

Ethical and legal experts as well as patients will ensure that the rights of research participants are protected.

Beyond establishing the network, the project aims to develop principles to enable access to samples and data and establish fair and transparent governance and processes.

By the end of the project, EPND should be a self-sustaining organisation, facilitating access to biological samples and data to accelerate biomarker discovery and validation and eventually supporting the development of therapeutics for neurodegenerative diseases.