Neurodegenerative diseases, such as Alzheimer’s and Parkinson’s, affect millions of people and will create an estimated economic burden of €267 billion in Europe by 2030. Despite the prevalence of neurodegenerative disorders, there is a lack of accurate diagnostic tools or effective treatments to prevent or modify disease progression.
The European Platform for Neurodegenerative Diseases (EPND) will address this growing challenge with transcontinental data sharing and collaboration, creating a powerful collective effort to accelerate biomarker discovery, development, and validation across Europe and the world.
Discover the EPND Cohort Catalogue, the first stage of the EPND sharing and discovery platform.
With 60+ international neurodegenerative disease cohorts listed, it’s easy to search, filter, and discover based on research needs. Explore metadata on participants and available biosamples, imaging, and cognitive data, and reach out to owners to jump-start collaborations.
Cohort owners can easily submit information about cohorts available for discovery, and manage cohort information over time.
Accelerate the discovery of diagnostics and treatment for neurodegenerative diseases by removing barriers to data and sample sharing and fostering collaboration
EPND is building a scalable and self-sustaining platform to accelerate discovery of diagnostics and therapeutics by enabling access to secure and reliable clinical samples and biodata. When the project is complete, EPND will facilitate access to neurodegenerative disease data and clinical samples from across Europe, representing more than 120,000 individuals.
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. Create a resource for discovery, harmonize data and metadata for available cohorts and biosamples, and enable their permissioned access and reuse.
EPND will facilitate new research connections and multidisciplinary collaboration to drive innovation for a diverse community in Europe and beyond.
Bringing together the EPND Consortium and a growing community of Cohorts, as well as features, tools, and analytics provided by the Alzheimer's Disease Data Initiative’s (ADDI) AD Workbench, we aim to remove existing barriers to collaboration.
Large-scale biomarker research holds the key to developing more accurate diagnostics for neurodegenerative diseases. Learnings and data generated from biomarker case studies will be incorporated back into the EPND platform to drive continued innovation, enabling researchers to discover data and samples to answer new research questions.
EPND will develop best-in-class policies and procedures for ethical data stewardship, optimising these procedures to reduce the burden on participating cohorts and data contributors.
The resources and strategies for the EPND platform are being developed with sustainability in mind, ensuring EPND will be a self-sustaining entity by the end of 2026.
EPND will combine technology, security, and governance for real, collective progress on neurodegenerative diseases.
EPND will springboard from the AD Workbench’s world class data and resource sharing to enable more collaboration across a bigger audience.
EPND prioritises patient privacy and will implement best-in-class procedures and legal, ethical, and operational regulations to ensure collective data security and compliance.
High-quality data leads to groundbreaking research. EPND will standardise and harmonise data to create highly discoverable, trustworthy, and interoperable content for researchers.
EPND is a collective effort designed to incorporate feedback from researchers, the diagnostic and biopharma industry, subject matter experts, regulators, patients, and caregivers. Please join our efforts to help shape the future of neurodegenerative diseases.
The people that power EPND
The EPND Consortium connects public and private leaders in neurodegenerative research and treatment from across Europe to accelerate progress.
EPND will bring together more than 60 separate cohorts to multiply their efforts and amplify their ability to create breakthroughs.
EPND will build a multidisciplinary, international community of users and contributors in the European Union, all working toward the same goal — to eradicate neurodegenerative disease.
EPND will be built on and powered by ADDI’s AD Workbench, 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.
ADDI’s AD Workbench is an open, global, and easy-to-use platform that makes it possible for researchers around the world to share and access data. AD Workbench provides infrastructure for free data sharing, state-of-the art computational resources and data science tools, and global collaboration opportunities.
Data discoverability is a core need for advancements in neurodegenerative research. ADDI’s FAIR data services facilitate simple search functionality for datasets and clinical samples.
Follow along as our work unfolds
07/06/2023
EPND partner profile: Charlotte Teunissen
Professor Teunissen is an expert on biomarkers for Alzheimer's disease and multiple sclerosis, leadi...
Read more07/05/2023
Deliverable 3.2: Best practices for biobanking
This report provides guidance on harmonisation and standardisation of biosamples, addressing challen...
Read more07/05/2023
Deliverable 3.3: SOP for body materials collection
This SOP provides guidance on procedures for collecting different types of biosamples, including pla...
Read more04/25/2023
EPND partner profile: Michele Hu
An interview with Professor Michele Hu, a leading Parkinson's disease researcher and co-principal in...
Read more04/17/2023
An interview with the Spanish Parkinson's Federation, and the EPND Parkinson's Advisory Group
In a special article for Parkinson's awareness month, we speak to the president of the Spanish Parki...
Read more12/15/2022
EPND Annual Meeting welcomes collaborators from our 29 partner organisations
Project consortium members gather in Amsterdam for the first EPND Annual Meeting...
Read more11/16/2022
Deliverable 2.1: Data Protection Impact Assessment
Identifying, assessing and addressing privacy risks: the EPND DPIA ...
Read more09/21/2022
Patient and caregiver perspectives on research and data sharing: Chris Roberts & Jayne Goodrick
Nothing about us, without all of us: an EPND interview with Chris Roberts and Jayne Goodrick...
Read more08/05/2022
Biomarker research and science policy: an interview with our newest PhD students, Marianna Rizzo and Audrey Hermans
An EPND interview with Marianna Rizzo and Audrey Hermans...
Read more
