ArticleFrontiers in neurology2022
Data and sample sharing as an enabler for large-scale biomarker research and development: The EPND perspective.
Article in Frontiers in neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 19 citations in OpenAlex.
- Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda.BMC medical ethics · 2025Article
- AD Workbench: Transforming Alzheimer's research with secure, global, and collaborative data sharing and analysis.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Identifying pathways to the prevention of dementia: the Netherlands consortium of dementia cohorts.BMC neurology · 2025Article
- From dementia prevention research to global FINGER-based multi-domain interventions and implementation strategies.Cerebral circulation - cognition and behavior · 2025Review
- The Innovative Health Initiative public-private partnership: a catalyst for big data-driven health research and innovation.Frontiers in medicine · 2025Article
- The pursuit of approaches to federate data to accelerate Alzheimer's disease and related dementia research: GAAIN, DPUK, and ADDI.Frontiers in neuroinformatics · 2023Article
- Digital endpoints in clinical trials of Alzheimer's disease and other neurodegenerative diseases: challenges and opportunities.Frontiers in neurology · 2023Review
- Precision medicine in neurodegeneration: the IHI-PROMINENT project.Frontiers in neurology · 2023Article
- Data sharing in neurodegenerative disease research: challenges and learnings from the innovative medicines initiative public-private partnership model.Frontiers in neurology · 2023Review
- Amyloid, p-tau, neurofilament light, and α-synuclein cerebrospinal fluid biomarkers across Alzheimer's disease, dementia with Lewy bodies, and Parkinson's disease.Alzheimer's & dementia (Amsterdam, Netherlands)Article
Corrections and comments
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Authors and funding
4 authors at 4 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Biomarker discovery, development, and validation are reliant on large-scale analyses of high-quality samples and data. Currently, significant quantities of data and samples have been generated by European studies on Alzheimer's disease (AD) and other neurodegenerative diseases (NDD), representing a valuable resource for developing biomarkers to support early detection of disease, treatment monitoring, and patient stratification. However, discovery of, access to, and sharing of data and samples from AD and NDD research are hindered both by silos that limit collaboration, and by the array of complex requirements for secure, legal, and ethical sharing. In this Perspective article, we examine key challenges currently hampering large-scale biomarker research, and outline how the European Platform for Neurodegenerative Diseases (EPND) plans to address them. The first such challenge is a fragmented landscape filled with technical barriers that make it difficult to discover and access high-quality samples and data in one location. A second challenge is related to the complex array of legal and ethical requirements that must be navigated by researchers when sharing data and samples, to ensure compliance with data protection regulations and research ethics. Another challenge is the lack of broad-scale collaboration and opportunities to facilitate partnerships between data and sample contributors and researchers, in addition to a lack of regulatory engagement early in the research process to enable validation of potential biomarkers. A further challenge facing projects is the need to remain sustainable beyond initial funding periods, ensuring data and samples are shared and reused, thereby driving further research and innovation. In addressing these challenges, EPND will enable an environment of faster and more disruptive research on diagnostics and disease-modifying therapies for Alzheimer's disease and other neurodegenerative diseases.
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