European platform for neurodegenerative disorders

Alzheimer’s disease (AD) and Parkinson’s disease (PD) are among the most common neurodegenerative conditions. They pose a major societal burden, because treatments that slow down these diseases are lacking. Treatment development is impeded by lack of biomarkers that can detect individuals early in the disease, measure treatment effects, and stratify patients.
European cohorts on aging and neurodegeneration provide a huge potential for biomarker discovery and validation since they collect bio-samples together with deep clinical and imaging phenotyping. However, the cohorts are difficult to access, because an overview of the availability of data and samples is lacking and protocols and regulations for data and sample collection, storage and sharing vary.
The objective of EPND is to develop a self-sustainable European platform to facilitate access to bio-samples and related data. We will build EPND using infrastructures that have shown proven value in public-private multi-stakeholder settings. In connection with the AD Workbench, EPND will support resource and participant level discovery, data harmonisation, central and federated data and sample storage and data analysis. The design of EPND is guided by ethical, legal and regulatory experts, patients and other stakeholders. EPND will also provide protocols for data and sample collection.
The sample and data discovery tools will be connected to a network of >60 supporting cohort studies on AD, PD, and related disorders. They give access to data from over 120.000 research participants including CSF samples (n=25.000), plasma samples (n=120.000), stools (n=6000), urine (n=27.000), saliva (n=17.000) and digital biomarkers (n=2000).
EPND will provide the community with a new and powerful environment to discover and validate biomarkers for neurodegenerative disorders. This will be critical for advancing the development of treatments for AD and PD.