"We are delighted to be part of this exciting and very important project. This will help building expertise and capability to our work to develop new biomarkers for dementia with Lewy bodies, a common but under-diagnosed and under-treated condition which often has a poor outcome."
Prof. Dag Aarsland, Professor of Old Age Psychiatry at King's IoPPN
02 November 2021
New European initiative will build a collaborative platform for data and sample sharing for neurodegenerative diseases
The European Platform for Neurodegenerative Diseases (EPND) integrates existing initiatives to build, grow, and deliver a scalable and self-sustainable platform for storage and analysis of high-quality clinical samples and data collections.
Members of the European Platform for Neurodegenerative Diseases (EPND) announced today that they will embark on a venture to establish a collaborative platform for efficient 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. Thanks to 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, harmonization, storage and analysis of high-quality clinical samples and data from neurodegenerative disease research.
“Gates Ventures is delighted to join UCB as EFPIA co-Lead for EPND,” said Niranjan Bose, Managing Director of Health and Life Sciences at Gates Ventures. “With the potential to make data accessible from more than 120,000 research participants, in partnership with over 60 European cohorts, EPND will provide vital information to scientists, researchers and clinicians. It will help accelerate the development of innovative biomarkers and improve access to biosamples, enabling validation of early detection tools."
This 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. This public-private partnership will accelerate and simplify innovation in the areas of R&D, regulatory, clinical and healthcare practices.
“Disjointed and uneven access to samples and data presents a huge challenge for academia and industry alike," said EPND Project co-Leader, Phil Scordis, Head of Patient Data Analytics at UCB. "EPND will bring together the neurodegenerative disease community across Europe, securing the legacy of many siloed initiatives and developing a Europe-wide platform with global reach through the partnership with ADDI.”
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.
The outcome of this programme will be the establishment of EPND as a European infrastructure to facilitate access to clinical samples and data to accelerate biomarker discovery, and support the development of neurodegenerative disease diagnostics and therapeutics that could touch lives all over the globe.
“‘The Innovative Medicines Initiative is proud to support EPND. I am confident that the resulting platform will help to advance research in the neurodegenerative field, where effective treatments are so urgently needed.” said Dr Pierre Meulien, Executive Director of the IMI.
For more information, please contact Patrick O'Brien (Senior Media Officer)
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Director, Centre for Healthy Brain Ageing