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. 2025 Feb 12;25(1):59.
doi: 10.1186/s12883-024-03995-4.

Identifying pathways to the prevention of dementia: the Netherlands consortium of dementia cohorts

Julie E Oomens  1 , Justine E F Moonen  2 , Stephanie J B Vos  3 , Magdalena Beran  4   5 , Pedro Mateus  6 , Peter P De Deyn  7   8 , Wiesje M van der Flier  2   9 , Mirjam I Geerlings  5   10   11   12 , Martijn A Huisman  9   10   13 , M Arfan Ikram  14 , Miranda T Schram  4   14   15   16 , P Eline Slagboom  17 , W M Monique Verschuren  5   18 , Marian Beekman  17 , Iñigo Bermejo  6 , Mahlet Birhanu  19 , Esther E Bron  19 , Andre Dekker  6 , Ingeborg Frentz  7   14 , Swier J F Garst  20 , Eva Jaarsma  9   21 , Almar A L Kok  9   10 , Sofia Marcolini  7 , Leon Mei  22 , Eric P Moll van Charante  23   24 , Edo Richard  25 , Casper G Schalkwijk  4 , Thomas T van Sloten  26 , Charlotte E Teunissen  27 , Emma L Twait  5   10   23 , Inge M W Verberk  27 , Jet M J Vonk  5   28 , Marjo P H van de Waarenburg  4 , Frank J Wolters  14   29 , Willemijn J Jansen  3 , Pieter Jelle Visser  3   2   30
Affiliations

Identifying pathways to the prevention of dementia: the Netherlands consortium of dementia cohorts

Julie E Oomens et al. BMC Neurol. .

Abstract

Background: Aggregation of cohort data increases precision for studying neurodegenerative disease pathways, but efforts to combine data and expertise are often hampered by infrastructural, ethical and legal considerations. We aimed to unite various cohort studies in the Netherlands to enhance research infrastructure and facilitate research on dementia etiology and its public health implications.

Methods: The Netherlands Consortium of Dementia Cohorts (NCDC) includes participants with initially no established cognitive impairment from 9 Dutch cohorts: the Amsterdam Dementia Cohort (ADC), Doetinchem Cohort Study (DCS), European Medical Information Framework for Alzheimer's Disease (EMIF-AD), Longitudinal Aging Study Amsterdam (LASA), the Leiden Longevity Study (LLS), The Maastricht Study, the Memolife substudy of the Lifelines cohort, Rotterdam Study and Second Manifestations of ARTerial disease-Magnetic Resonance (SMART-MR) study. The objectives of NCDC are to improve data infrastructure and access to cohorts related to aging and dementia, investigate the role of Alzheimer's disease and vascular pathology in the development of dementia and estimate the public health impact of established dementia risk factors by assessing their relative contribution to the population burden of dementia.

Results: We increased the findability, accessibility, interoperability and reusability (FAIR) status of the cohorts through harmonization of data across cohorts, implementation of medical imaging repositories for scan management, implementation of the Personal Health Train infrastructure and provision of meta-data in existing cohort catalogues. We established the ethical and legal frameworks required for federated and pooled analyses and performed the first remote federated data analyses using the Personal Health Train infrastructure. To determine biomarkers of Alzheimer's disease, endothelial dysfunction and inflammation, 2554 plasma samples were analyzed centrally. Federated, pooled, and coordinated meta-analyses have led to multiple publications in the context of NCDC.

Conclusion: The combination of population-based and clinical cohorts, the coordinated assessment of plasma markers in previously collected samples and implementation and use of the Personal Health Train infrastructure for federated analysis are both feasible and promising for future collaborative efforts.

Keywords: Alzheimer’s disease; Cohort studies; Data access; Data infrastructure; Dementia prevention; FAIR; Harmonization; Netherlands Consortium of Dementia Cohorts; Personal Health Train; Vascular pathology.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: TVS has received research operating funds from the Dutch Diabetes Foundation (fellowship grant number 2021.81.004) and the European Foundation for the Study of Diabetes.” IV received funding from Health~Holland for a collaborative research project with Olink, Quanterix and Utrecht University. IV received speaker honoraria from Quanterix, paid directly to her institution. No other competing interests were declared.

Figures

Fig. 1
Fig. 1
Associations studied within in the Netherlands Consortium of Dementia Cohorts
See this image and copyright information in PMC

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