Our Platform

Designing a technical solution for data sharing and discovery

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.

Four key components of establishing the platform

The EPND platform will be built on four major components to provide a complete system for data and biosample storage, analysis, and protection.

Establishing a single trusted source and repository

EPND will create a central user interface to facilitate discovery, access, and analysis of data and samples from neurodegenerative disease research studies across Europe.

Common data standards to drive interoperability

EPND will evaluate existing data harmonisation, governance, and sharing processes, to support interoperability between datasets.

Cultivating shared practices

EPND will build a culture of best practices surrounding collection, storage, and sample management through the platform.

Facilitating discovery, collaboration, and analysis

The EPND platform will enable users to contribute and discover datasets and resources, find and request access to biosamples, identify collaborators, and access tools and resources for analysis.

Discover the cohort catalogue

Explore the first version of the EPND catalogue, which includes an extensive list of international cohorts across the neurodegenerative disease 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.

Discover the catalogue

Timeline: The 5-year plan to bring EPND to reality

The EPND Consortium partners will build and establish the platform network over the next five years in several stages:

Join us on the journey

November 2021:

EPND program established

Formal funding and endorsement of EPND Consortium
October 2022:

EPND Cohort Catalogue launched

Online catalogue with searchable metadata of 60+ neurodegenerative cohorts
January 2023:

Data Protection Impact Assessment completed

Assessment of GDPR risks, identifying privacy safeguards to ensure responsible data management
April 2023:

Biobanking and biomarker SOPs published

Standard Operating Procedures for biobanking, biomarker validation and biosample collection
July 2023:

Establishment of Stakeholder Advisory Framework

Launch of Expert Groups and External Advisory Board for multi-stakeholder engagement with EPND
November 2023:

Cohorts discoverable at resource level

Users can search and request access across datasets from cohorts made available through EPND partners

Harnessing the power of the Alzheimer's Disease Data Initiative

Publicly launched in 2020, ADDI’s AD Workbench is a platform that provides infrastructure for free data sharing, data science tools, and global collaboration opportunities for the acceleration of neurodegenerative disease research. AD Workbench powers EPND’s platform, creating a community of practice to connect neurodegenerative disease research in Europe, and contributing to the collective goal of advancing scientific breakthroughs and accelerating progress.

Joining forces with a powerful tool for researchers

The AD Workbench facilitates research and sharing on Alzheimer’s disease and related dementias. The initiative is guided by three main principles: increasing data sharing, easing data access, and developing new tools and analytics for researchers to use and share. Users can search, analyse, and manage existing datasets; save their work; upload and share new datasets and code; and allocate their workload to a virtual machine — capabilities that will all be made available to the EPND network.

Establishing infrastructure to support quality data sharing

To forge a new path for neurodegenerative disease research, researchers and the medical community will need the best information possible. That’s why EPND will implement FAIR data practices, based on principles of findability, accessibility, interoperability, and reusability. FAIR practices will be adopted across every part of the initiative and will support discovery of datasets via the AD Workbench’s FAIR search functionality.

Learn more about ADDI