Accelerating the discovery of diagnostics and treatment for neurodegenerative diseases by removing barriers to data and sample sharing and fostering collaboration
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.
Innovation thrives on collaboration. EPND will bring together a multidisciplinary group of researchers, data scientists, and healthcare professionals. We will accelerate collective efforts by integrating existing initiatives and removing traditional barriers to collaboration and discovery.
EPND will facilitate data sharing and collaboration with a central point of access via the Alzheimer's Disease Data Initiative (ADDI) and its Alzheimer's Disease (AD) Workbench. Whether you have a research question to answer, innovative code to share, or data to contribute, the EPND platform will provide a seamless environment for discovery and collaboration.
EPND will honour patient contributions, data security, and privacy by managing data responsibly, with compliance to GDPR at the forefront of the initiative. EPND will follow and establish best-in-class policies and procedures to ensure data can be shared effectively without compromising individual privacy.
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 all 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 the Alzheimer’s Disease Data Initiative’s (ADDI) AD Workbench, a platform which provides infrastructure for free data sharing, data science tools, and global collaboration opportunities. EPND will function as the European node within this global data sharing community, 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. The Workbench also includes state-of-the-art computational resources and tools for analysis and collaboration.
Data discoverability is a core need for advancements in neurodegenerative research. ADDI’s Fair Safe Data Discovery facilitates simple search functionality for datasets and clinical samples.
Follow along as our work unfolds