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. 2025 May 31;17(1):123.
doi: 10.1186/s13195-025-01725-7.

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

Casper de Boer  1   2 , Hanneke F M Rhodius-Meester  3   4   5   6 , Sophie M van der Landen  3   4 , Jurgen Claassen  7   8 , Romy de Haan  9 , Janne M Papma  9   10 , Harro Seelaar  9 , Marleen Kloppenburg-Lagendijk  11 , Barbara van Munster  12   13 , Marjolein de Vugt  14 , Derk Arts  15 , Marco Blom  16 , Tanja J de Rijke  17   18   19 , Miriam Beusink  20 , Robbert Huijsman  21 , Evert-Ben van Veen  22 , Argonde van Harten  3   4 , Jort Vijverberg  3   4 , Marissa Zwan  3   4 , Henk-Jan Mutsaerts  3   4   23 , Sven J van der Lee  3   4   24 , Wiesje M van der Flier  3   4   25
Affiliations

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

Casper de Boer et al. Alzheimers Res Ther. .

Abstract

Background: Alzheimer'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.

Method: The 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.

Results: The 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.

Conclusion: The 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.

Keywords: Alzheimer’s disease; Diagnosis; Patient-orchestrated care; Personalized medicine; Prediction; Prevention.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: All patients provided written informed consent for their data to be used for research purposes. The study was approved by the Research and Ethics Board of Amsterdam UMC (METc 2022.0120). The study was performed in accordance with the Declaration of Helsinki. Consent for publication: Not applicable. Competing interests: Research programs of Wiesje van der Flier have been funded by ZonMW, NWO, EU-JPND, EU-IHI, Alzheimer Nederland, Hersenstichting CardioVascular Onderzoek Nederland, Health~Holland, Topsector Life Sciences & Health, stichting Dioraphte, Gieskes-Strijbis fonds, stichting Equilibrio, Edwin Bouw fonds, Pasman stichting, Philips, Biogen MA Inc, Novartis-NL, Life-MI, AVID, Roche BV, Eli-Lilly-NL, Fujifilm, Eisai, Combinostics. WF holds the Pasman chair. WF has been an invited speaker at Biogen MA Inc, Danone, Eisai, WebMD Neurology (Medscape), NovoNordisk, Springer Healthcare, European Brain Council. WF is consultant to Oxford Health Policy Forum CIC, Roche, Biogen MA Inc, and Eisai. WF participated in advisory boards of Biogen MA Inc, Roche, and Eli Lilly. WF is member of the steering committee of EVOKE/EVOKE+ (NovoNordisk). All funding is paid to her institution. WF is member of the steering committee of PAVE, and Think Brain Health. WF was associate editor of Alzheimer, Research & Therapy in 2020/2021. WF is associate editor at Brain. WF is member of Supervisory Board (Raad van Toezicht) Trimbos Instituut.Evert-Ben van Veen was a paid consultant for the consent procedure and the regulation instituting the governance structure of the ABOARD Cohort. Evert-Ben van Veen was a paid consultant for the consent procedure and the regulation instituting the governance structure of the ABOARD Cohort.

Figures

Fig. 1
Fig. 1
Visualization of data (management) streams in the ABOARD Cohort RWD platform
Fig. 2
Fig. 2
Flyer pertaining to ‘An hour for Alzheimer’s’ campaign. An annual social media campaign together with Alzheimer Nederland (Dutch Alzheimer’s Association) has been deployed to increase awareness. The narrative of this campaign is that by contributing only an hour of their time, anyone can help advance Alzheimer’s research (slogan: “Uurtje voor Alzheimer”; “one hour for AD”)
Fig. 3
Fig. 3
Enrollment numbers-and self-reported sources
See this image and copyright information in PMC

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