Accelerating the discovery of diagnostics and treatment for neurodegenerative diseases by removing barriers to data and sample sharing and fostering collaboration
Explore the landscape of neurodegenerative disease research cohorts in Europe and beyond. Search and filter metadata on research participants, biosamples, cognitive data and more
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.
Accelerate the discovery of diagnostics and treatment for neurodegenerative diseases by removing barriers to data and sample sharing and fostering collaboration
Currently, the medical community lacks treatments that can prevent or slow the progression of neurodegenerative diseases. One major barrier for researchers is a lack of access to secure and reliable clinical samples and biodata to develop diagnostic tools and therapeutics more effectively.
To address this, EPND is building a scalable and self-sustaining platform to accelerate discovery of diagnostics and therapeutics. 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. The neurodegenerative disease research community can use this secure, accessible platform in a collective effort to develop diagnostic tools and treatments, to change the future for patients and their caregivers.
Without a collective effort, research on neurodegenerative diseases will stall. EPND brings together leaders from academic research, the pharmaceutical industry, and data science in a multidisciplinary, public-private partnership for a diverse community in Europe and beyond. We will accelerate collective efforts by building on existing initiatives, removing traditional barriers to collaboration and discovery, and integrating research cohorts to make them discoverable, enabling information, sample, and data exchange.
EPND will bring together existing cohorts and initiatives from public and private sectors to build a scalable and sustainable platform with a central point of access for data sharing, discovery, and analysis that utilises features, tools, and analytics provided by the Alzheimer's Disease Data Initiative’s (ADDI) AD Workbench.
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.
In establishing the EPND platform, we will provide governance, good practice, and guidance for users from across disciplines, validate and fine-tune functionality of the platform with case studies, and embed a sustainability-by-design approach to ensure a cost-effective, value-added platform for the global research community.
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
EPND partner profile: Michele Hu
An interview with Professor Michele Hu, a leading Parkinson's disease researcher and co-principal in...Read more
EPND poster at AD/PD conference
An ePoster on EPND was presented at the 2023 AD/PD conference...Read more
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 more
EPND Annual Meeting welcomes collaborators from our 29 partner organisations
Project consortium members gather in Amsterdam for the first EPND Annual Meeting...Read more
Deliverable 2.1: Data Protection Impact Assessment
Identifying, assessing and addressing privacy risks: the EPND DPIA ...Read more
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 more
Patient privacy and the GDPR - an interview with Adrian Thorogood
Patient privacy and the GDPR: an EPND interview with Adrian Thorogood...Read more
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
New biomarker study published in JAMA Neurology
Large-scale biomarker study provides new prevalence estimates for Alzheimer’s disease brain patholog...Read more