EPND

Alzheimer’s disease (AD) and Parkinson’s disease (PD) are among the most common neurodegenerative conditions with an estimated economic burden in Europe of €267 billion by 2030 (PMID: 27567862). Treatments that can prevent the disease or modify disease progression are still lacking. One of the key barriers to effective development of these treatments is an incomplete toolbox of biomarkers. The development of effective treatments requires biomarkers for early detection of disease in individuals, for assessing treatment efficacy, and for patient stratification. While AD is the one of the few neurodegenerative diseases with some established biomarkers, even these do not capture the molecular complexity of the disease. For PD and related disorders the situation is more bleak; where, beyond imaging of dopamine metabolism, no trait or state biomarkers have made it into clinical practice.

Significant amounts of data and samples already exist in Europe that could be used to  accelerate biomarker discovery for AD and PD. However, at this time these data and samples cannot be easily found and exploited by the research community. The key unmet need is a universal platform that enables the discovery, sharing and use of high quality samples and data for accelerating biomarker discovery, development and validation while maintaining robust protection for the fundamental rights of data subjects and high ethical standards.
Members of our project team and numerous previous initiatives have demonstrated that it is possible to develop platforms that improve access to samples and data in the neurodegenerative field. However, these data platforms lack integration and therefore, remain isolated for only limited use.

We aim to integrate existing initiatives and build, grow and deliver a scalable and self-sustainable platform called the European Platform for Neurodegenerative Diseases (EPND) for storage and analysis of high quality clinical and biological samples
and data collections. Current and prospective samples and data will be made Findable, Accessible, Interoperable and Reusable (FAIR) for the researcher community, including drug developers, via the ‘AD Workbench’. This public-private federated bio-banking infrastructure will optimise use of existing resources, including a large portfolio of ongoing longitudinal cohorts, infrastructure, and proven ethical/legal governance models. Linkage with the federated environment, facilitated by the AD Workbench via partnership with the AD Data Initiative (ADDI) also opens the scope beyond Europe into the international community.