Evidence map›Paper›PMID 40448198›Full record

ArticleAlzheimer's research & therapy2025

Towards a national registry for Alzheimer's disease and related dementias: rationale, design, and initial observations of the ABOARD cohort.

Casper de Boer, Hanneke F M Rhodius-Meester, Sophie M van der Landen, Jurgen Claassen, Romy de Haan, Janne M Papma, Harro Seelaar, Marleen Kloppenburg-Lagendijk, Barbara van Munster, Marjolein de Vugt and 12 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's research & therapy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Casper de BoerAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands. c.deboer2@amsterdamumc.nl.
Hanneke F M Rhodius-MeesterAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Sophie M van der LandenAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Jurgen ClaassenDepartment of Geriatrics, Radboud University Medical Center and Donders institute, Nijmegen, The Netherlands.
Romy de HaanDepartment of Neurology and Alzheimer Center Erasmus MC, Erasmus MC - University Medical Center, Rotterdam, The Netherlands.
Janne M PapmaDepartment of Neurology and Alzheimer Center Erasmus MC, Erasmus MC - University Medical Center, Rotterdam, The Netherlands.
Harro SeelaarDepartment of Neurology and Alzheimer Center Erasmus MC, Erasmus MC - University Medical Center, Rotterdam, The Netherlands.
Marleen Kloppenburg-LagendijkGeriatric Center, Frisius MC Leeuwarden, Leeuwarden, The Netherlands.
Barbara van MunsterUniversity Medical Center Groningen, University Center for Geriatric Medicine, University of Groningen, Groningen, The Netherlands.
Marjolein de VugtDepartment of Psychiatry and Neuropsychology/Alzheimer Center Limburg, Mental Health and Neuroscience Research Institute, Maastricht University, Maastricht, The Netherlands.
Derk ArtsCastor EDC, Amsterdam, The Netherlands.
Marco BlomAlzheimer Nederland, Amersfoort, The Netherlands.
Tanja J de RijkeDepartment of Medical Psychology, Amsterdam UMC location AMC, University of Amsterdam, Amsterdam, The Netherlands.
Miriam BeusinkHealth-RI, Utrecht, The Netherlands.
Robbert HuijsmanErasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Evert-Ben van VeenMedLawconsult, Voorburg, The Netherlands.
Argonde van HartenAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Jort VijverbergAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Marissa ZwanAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Henk-Jan MutsaertsAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Sven J van der LeeAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.
Wiesje M van der FlierAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, De Boelelaan 1118, Amsterdam, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAlzheimer's disease and related dementias (ADRD) take 20 to 30 years to develop, yet setting up studies or registries that take into account the entire disease trajectory is difficult and time consuming. Moreover, prediction models are often based on selected research populations and their outcomes may not be most relevant to patients' daily lives. To address these gaps we set up the ABOARD Cohort, a national data collection infrastructure to (i) study the disease trajectory using patient reported outcome measures (PROMs) and medical data, (ii) link to available data sources, and (iii) serve as central platform to facilitate research, roll out healthcare innovations, and accommodate nationwide disease registration. Here, we describe the design of the project and characteristics of the first 10,275 participants.

methodThe ABOARD Cohort is an ongoing, participant-centered data-collection, taking PROMs and a minimal case report form (CRF) with relevant medical data as starting point, supplemented with linkage to existing data sources. Eligible participants with or at-risk of ADRD a and their study partners are recruited directly-to-participant, i.e. without the need for a doctor to sign informed consent. Informed consent and annual collection of PROMs are fully online. Relevant stakeholders are involved in decisions on project development through a participants panel and on data usage through a data access committee.

resultsThe ABOARD Cohort has been fully operational since January 2023. As of October 2024, 10,275 participants (mean age 66.1 (9.2) years, 70% female) and 1,383 study partners signed up, and received an invitation to fill in online questionnaires and complete a digital cognitive test. Over 90% of participants gave consent to link their data to existing data sources. Participants who had consulted a doctor for memory problems (N = 1,128), reported worse outcomes on PROMs assessing mental health and cognition, quality of life and lifestyle, compared to those who had not.

conclusionThe ABOARD Cohort has been set up as a national infrastructure to study ADRD disease trajectories, linking data-sources, with the participant at the steering wheel. This infrastructure has the potential to serve as a registry to advance research and roll out healthcare innovations on a national level.

Indexed as

Alzheimer DiseaseDementiaRegistriesAgedAged, 80 and overCohort StudiesFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresResearch DesignAlzheimer’s diseaseDiagnosisPatient-orchestrated carePersonalized medicinePredictionPrevention

Identifiers

PMID40448198
PMCPMC12125861

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.