A new European initiative will see the development of a collaborative platform for data and sample sharing for neurodegenerative diseases.
The project, from the European Platform for Neurodegenerative Diseases (EPND), will enable sample and data sharing, leveraging and linking existing European research infrastructures to accelerate the discovery of biomarkers, new diagnostics and treatments for the benefit of people with neurodegenerative diseases such as Alzheimer’s and Parkinson’s.
There is currently a lack of available treatments that can prevent or modify the progression of neurodegenerative disorders like Alzheimer’s disease (AD) and Parkinson’s disease (PD), which affect millions of people in Europe.
Despite robust research efforts to accelerate biomarker discovery, at this time there are few secure, accessible ways for clinical samples and data to be discovered and shared within the neurodegenerative disease research community.
“Alzheimer’s and Parkinson’s cost millions of lives and will create an estimated economic burden in Europe of €267 billion by 2030,” said project co-coordinator Pieter Jelle Visser, associate professor at the University of Maastricht.
“EPND will answer this massive challenge with a solution on the same scale, bringing together teams, samples and data from across the continent.”
The development of effective treatments requires biomarkers for early detection of disease in individuals, for assessing treatment efficacy, and for patient stratification.
Through funding from the Innovative Medicines Initiative (IMI), EPND will begin a five-year effort to establish a self-sustaining network that will support the discovery, harmonisation, storage and analysis of high-quality clinical samples and data from neurodegenerative disease research.
The programme will build a secure platform via a European node on the AD Workbench of the Alzheimer’s Disease Data Initiative (ADDI), a medical research organisation committed to increasing interoperability of data platforms and empowering scientists to analyse data for new discoveries in dementia research.
Through this collaboration, EPND aims to integrate and build on existing initiatives while removing barriers to collaboration and discovery.
“The EPND platform will move us towards comprehensive data discovery, harmonisation, storage and analysis, by virtue of a core workbench concept that builds upon national and international data infrastructures.” said project co-coordinator Anthony Brookes, professor of genetics at the University of Leicester.
“The collaboration will deliver on the promise of big data to rapidly generate new knowledge and share emerging insights, and thereby advance AD and PD treatments whilst also providing an integrative technical and governance template that can be adopted by many more healthcare domains.”
Beyond establishing the network, the project aims to create agreed principles to enable access to samples and data, establish fair and transparent governance and processes, and achieve self-sustainability after five years.
When complete, it will create a new entity supported by some of the most prestigious medical and research organisations in the EU.
The public-private partnership will accelerate and simplify innovation in the areas of R&D, regulatory, clinical and healthcare practices.
With a commitment to enabling secure and transparent data sharing and sample access, EPND aims to optimise the use of existing resources, including a large portfolio of longitudinal research cohorts, while leading with high ethical standards and robust protection for the fundamental rights of research participants in compliance with the GDPR.
