Who are the partners in ABOARD?

More than thirty public and private organisations are collaborating within ABOARD. These include universities, healthcare and research institutions, civil society organisations and businesses.

The consortium falls under ZonMw’s Dementia Research Programme, which also funds the consortium, together with Health Holland.

Who’s who?

Prof. Dr Wiesje van der Flier (VUMC) is the project leader of the ABOARD consortium. Heleen Hendriksen (Amsterdam UMC) is the project and implementation manager.

The research is divided into six so-called work packages. The project leaders are Prof. Dr Charlotte Teunissen (VUMC), Prof. Dr Wiesje van der Flier (Amsterdam UMC), Prof. Dr Marjolein de Vugt (Maastricht UMC+), Prof. Dr Ellen Smets (Amsterdam UMC) and Marco Blom (Alzheimer Nederland).

The team also includes specialists in the fields of talent development and data organisation, namely:

• Dr Janne Papma (Erasmus MC), Dr Irene Heger and Dr Heleen Hendriksen, who coordinate the junior training programme/talent programme.
• Dr Casper de Boer (Amsterdam UMC) is the data steward.

Read more about the research programme at zonmw.nl.

Collaborating partners

Amsterdam UMC (Alzheimercentrum Amsterdam), lead applicant
Maastricht UMC+
Erasmus MC
Radboudumc
UMC Groningen
Delft University of Technology (TU Delft)
InHolland
Vilans
Pharos
Health-RI
Jeroen Bosch Hospital
Frisius MC
Healthcare Innovation Forum
Pharmo/Stizon
Alzheimer Nederland
Brain Foundation
ANBO-PCOB
PGGM
KPMG
Health Insurers Netherlands
CZ
Zilveren Kruis
Neurocast
Philips
ADx
Castor
Association for Innovative Medicines
Roche NL
Biogen NL
Novartis
Brain Research Centre
Lilly
Vektis
Edwin Bouw Fund
Gieskes-Strijbis Fund
Nederlands Geheugenpoli Netwerk

A more personalised approach to the prevention, diagnosis and prognosis of Alzheimer’s

The key to halting Alzheimer’s disease lies in the pre-dementia stages. This phase requires a ‘personalised approach’ with the patient at the helm.

ABOARD stands for A Personalised Medicine Approach for Alzheimer’s Disease. The research, divided into six work packages, focuses on personalised prevention, diagnosis, prediction and care for Alzheimer’s.

Prevention: what can you do yourself?

Lifestyle influences the risk of dementia. That is why ABOARD has developed an online tool to prevent dementia (see ‘What are the benefits?’). This helps people gain insight into their personal risk factors and encourages them to improve their lifestyle. The tool is being tested and refined in collaboration with patients and healthcare professionals.

In addition, ABOARD is preparing for new medicines that can slow the progression of dementia. Researchers are developing ways to involve more people in research; they are also investigating how the care system can adapt to this. In this way, ABOARD ensures that prevention and treatment together enable the best possible care.

Diagnosis: how can Alzheimer’s be diagnosed earlier and more accurately?

An accurate and timely diagnosis is the first step towards the right treatment. Alzheimer’s often begins years before symptoms become noticeable. That is why ABOARD is working on new ways to detect this disease early and accurately. Researchers are focusing on digital solutions, genetics and biomarkers in the blood (substances that can be used to identify the disease). In this way, ABOARD aims to make diagnosis accessible to everyone who needs it.

Prediction: what lies ahead for you?

Personalised predictions are needed to detect Alzheimer’s earlier and treat it more effectively: tailored to an individual’s personal situation. ABOARD is developing computational models that both assess the risk of Alzheimer’s and predict how the disease will progress in a particular individual.

To this end, ABOARD combines data from long-term research, such as the ABOARD Cohort, with new techniques. In this way, the researchers are building personalised predictions. This helps to intervene earlier and be better prepared for what lies ahead.

You can read more about the ABOARD Cohort at Alzheimer Nederland.

Patient-centred care: care that suits the individual

What does it mean to be told that you (might) develop Alzheimer’s? Some people prefer to have clarity as soon as possible, whilst others have doubts: do I actually want to know? And once you know, what can you do with that information?

Predictions and diagnoses raise many questions. But clear explanations and appropriate support are by no means always available. This particularly affects people from migrant backgrounds or those with limited health literacy. What do people with (or at risk of) Alzheimer’s, their loved ones and care providers need throughout the entire care journey? And how do we ensure that everyone has access to good care and reliable information? ABOARD is investigating this in this work package.

Communication, dissemination and implementation

ABOARD is working on personalised prevention, diagnosis and prediction for Alzheimer’s. However, this knowledge does not automatically find its way to people at home or to doctors in their consulting rooms. Care providers do not always have the right resources or training to put it into practice. People sometimes do not know where to find reliable information. How can new insights be made usable, recognisable and applicable to everyone? ABOARD is looking into this.

See also the project information about ABOARD on zonmw.nl.

Fundamental and applied research

ABOARD carries out a combination of fundamental and applied research.

What links all this research is collaboration with people with (or at risk of) Alzheimer’s, carers, policymakers and businesses.

Understanding what goes wrong

A significant part of ABOARD’s research is fundamental. ABOARD aims to understand exactly what goes wrong in the brain in Alzheimer’s disease. The researchers are looking for (new) substances in the blood, such as proteins that may indicate inflammation or damage to brain cells. They are also examining genetic factors and using artificial intelligence (AI) to identify patterns in large amounts of data.

They then use this knowledge to build risk models: computational models that predict who is at risk of dementia, and how that risk develops over time.

Building mathematical models: making predictions

ABOARD researchers will collect data on a large scale and over the long term from a large group of people (a cohort). This is known as the ABOARD Cohort. In this applied research, participants are in the driving seat. They submit data via their mobile phones and specify who is authorised to access it. Via a platform (Castor), the researchers collect, amongst other things, so-called patient-reported outcomes. These relate, for example, to how they feel, their autonomy and their daily activities. ABOARD combines this data with existing information from sources such as GP records, data from memory clinics and other cohort studies (such as the Rotterdam Study and the Amsterdam Dementia Cohort). The researchers then build predictive models, using AI, amongst other tools. They test the models in various settings, including GP practices and memory clinics. This ensures the results are applicable in practice.

Building mathematical models: measuring cost-effectiveness

ABOARD also develops mathematical models capable of performing scenario analyses. This enables ABOARD to investigate the other aspect of prevention: that of disease-slowing medication. A mathematical model maps out the entire ‘patient journey’: from the first symptoms to treatment and support. Researchers then run simulations for various scenarios: what if 20 per cent of people take part in prevention? What if a medicine is expensive but effective? By comparing such scenarios side by side, using data on costs, quality of life and healthcare utilisation, we gain insight into what works and what is feasible.

Preliminary research into prevention

ABOARD’s focus is on preparatory research into prevention. For example, in applied research, researchers are developing and testing an online lifestyle module. This is intended for use in the memory clinic. Think of an app in which people can identify their own lifestyle risks for dementia and receive personalised tips on how to improve their brain health. In pilot studies, ABOARD researchers are examining how patients respond. Does such a tool have a motivating effect? And what will be needed to roll out such a module on a large scale in the future?

Psychosocial research

The ABOARD researchers are mapping out how members of the public, patients and informal carers can take control of their own health and care. They are investigating what information people need to make choices about prevention, risk assessment and diagnosis, and how they would prefer to be supported in that process. To this end, ABOARD uses a combination of interviews, focus groups, questionnaires and observations.

Based on new insights, ABOARD researchers develop resources, such as conversation tools. They also create training programmes for healthcare professionals and teaching materials for students. Through platforms such as dementie.nl and dementiezorgvoorelkaar.nl, they ensure that these tools are made widely available.

Knowledge and tools for personalised care

ABOARD is developing practical products for healthcare professionals, policymakers and the general public that contribute to a more personalised approach to the diagnosis, prediction and prevention of Alzheimer’s disease.

These include individual risk prediction models, new diagnostic tools and lifestyle modules aimed at preventing Alzheimer’s.

ABOARD shares all its knowledge resources and tools online via websites including Alzheimer Nederland, dementie.nl, zorgvoorbeter.nl and dementiezorgvoorelkaar.nl. An overview can be found at Alzheimer Nederland.

Scientific publications

Naturally, ABOARD also publishes scientific articles. An overview of these can be found on Alzheimer Nederland.nl and on zonmw.nl.

Breinzorg.nl

ABOARD has developed the online lifestyle module breinzorg.nl. It shows you which risk factors for dementia apply to you. You can then select a number of risk factors to focus on. In the corresponding modules, you’ll receive practical and actionable tips to improve your brain health in that area.

Knowledge on effective engagement

At the same time, the consortium is developing materials to reach more people with prevention research. What actually works when inviting members of the public or GPs to take part in a trial? These lessons are being compiled and shared.

New diagnostic tools

ABOARD is developing new diagnostic tools to detect Alzheimer’s earlier and more accurately. These include blood tests that can more easily detect Alzheimer’s proteins in the blood. Researchers are also working on new methods that can easily determine an individual’s personal genetic risk of Alzheimer’s.

ABOARD Cohort

A key outcome for researchers is the ABOARD cohort: a new, large-scale collection of data from a large group of people with and without memory problems. The data is stored in a new system; participants can manage their own data, and researchers can combine it with data from other sources, such as GPs.

You can register for the cohort via Alzheimer Nederland.nl.

Predictive models: for prevention and healthcare policy

Using data from the ABOARD Cohort, ABOARD researchers are developing mathematical models capable of predicting individual risks. ABOARD then aims to develop online tools that will enable members of the public and healthcare professionals to utilise these models.

ABOARD is also working on predictive models that can estimate the long-term effect of preventive interventions and future medicines. Health insurers and policymakers can use these to design future care pathways for Alzheimer’s.

Blended training

In addition, ABOARD is aiming to provide what is known as ‘blended training’. This trains healthcare professionals to use these tools in practice. ABOARD would also like to integrate this knowledge into education; for example, into training programmes for nurses or case managers.

Tools for patient-centred care: ADappt.health

Patients and their loved ones want to be in control, including when it comes to the diagnosis and treatment of Alzheimer’s. That is why ABOARD is developing e-tools for healthcare professionals, such as ADappt.health. These tools assist in discussing risk profiles and treatment options.

For healthcare professionals, ADappt.health offers, amongst other things, a guide to making decisions together with patients and a calculation tool to determine the risk of dementia, complete with a results page that helps to explain this in a sensitive and understandable way. For patients, ADappt.health offers, amongst other things, a list of sample questions that would normally only occur to them after the consultation.

Webinars

ABOARD has also produced a series of webinars in which it provides updates to the general public on topics covered by the ABOARD research.

Together with the target group

People with Alzheimer’s, their loved ones and other members of the public are actively involved in shaping the project: deciding what is being researched, how information is shared and what is needed to apply new knowledge in everyday life. For example, they take part in interviews and focus groups, test prototypes and provide feedback on communication materials.

ABOARD also consults the target group through organisations such as Alzheimer Nederland, the Hersenstichting, PGGM, KBO-PCOB and the Zorg Innovatie Forum. These organisations give their members a voice in the project through focus groups; they also actively gather wishes, experiences and ideas through interviews, surveys and panels.

ABOARD also has what is known as an end-user committee; furthermore, representatives of people with Alzheimer’s sit on ABOARD’s board.