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 EPND platform will be built on four major components to provide a complete system for data and biosample storage, analysis, and protection.
EPND will create a central user interface to facilitate discovery, access, and analysis of data and samples from neurodegenerative disease research studies across Europe.
EPND will evaluate existing data harmonisation, governance, and sharing processes, to support interoperability between datasets.
EPND will build a culture of best practices surrounding collection, storage, and sample management through the platform.
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.
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.
The EPND Consortium partners will build and establish the platform network over the next five years in several stages:
EPND program established
Formal funding and endorsement of EPND Consortium
EPND Cohort Catalogue launched
Online catalogue with searchable metadata of 60+ neurodegenerative cohorts
Data Protection Impact Assessment completed
Assessment of GDPR risks, identifying privacy safeguards to ensure responsible data management
Biobanking and biomarker SOPs published
Standard Operating Procedures for biobanking, biomarker validation and biosample collection
Establishment of Stakeholder Advisory Framework
Launch of Expert Groups and External Advisory Board for multi-stakeholder engagement with EPND
Cohorts discoverable at resource level
Users can search and request access across datasets from cohorts made available through EPND partners
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.
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.
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.