On 22 April, Alzheimer Europe held its inaugural Research Insights webinar on the topic “Data Sharing in Dementia Research”. Moderated by Angela Bradshaw, Director for Research at Alzheimer Europe, the online event brought together perspectives from lived experience, public engagement, research infrastructure, clinical decision support, digital twins and personalised prevention.
Angela Bradshaw opened the webinar by explaining why data sharing has become such a timely issue. Dementia research increasingly depends on combining different kinds of information and making better use of data that already exist. She framed the session as an opportunity to look at the topic from several angles, including the experiences of research participants, public attitudes, technical and legal barriers and the ways in which shared data can support new tools for research and care.
The first presentation came from Patrick (Paddy) Crosbie, Member of the European Dementia Carers Working Group, who spoke about his experience caring for his late husband Derek, who had early-onset Alzheimer’s disease. He ex-plained that he and Derek had taken part in several forms of research and pointed to one recurring frustration: participants do not always hear what happened next, whether in terms of findings, follow-up or how a study developed after they had contributed. People want to know what their data will be used for, how they will be shared and whether they will be kept secure. He also argued that involving people with lived expe-rience makes research stronger by grounding it in day-to-day realities.
Lukas Duffner, Project Officer at Alzheimer Europe, then presented the organisation’s newly launched report on research participation and data sharing in Europe. You can find out more about the report in this article. The findings he shared pointed to substantial support for data sharing, though not without conditions. A clear majority of respondents agreed that sharing research data is important for progress in dementia research and acceptable when it helps to find better treatments, provided identities remain confidential. At the same time, respondents wanted researchers to explain how data would be used, and some worried that sharing could lead to misuse or unexpected problems. Views also differed depending on who would receive the data, with stronger support for sharing with researchers in Europe than with recipients outside Europe or in the pharmaceutical industry.
Matt Clement of Gates Ventures followed, with an overview of how data sharing can advance dementia research through the Innovative Medicines Initiative (IMI)-funded European Platform for Neurodegenerative Diseases (EPND) project. He described the platform as a response to several common barriers in the field; limited visibility of existing data and biosamples, the complexity of gaining access to them in safe, legal and ethical ways and the need for sustainable infrastructure that supports collaboration across different research groups. Rather than storing everything centrally, EPND helps researchers discover what resources exist, request access to them and make better use of them.
Linus Jönsson of Karolinska Institutet then presented the PROMINENT project, which is developing a precision medicine platform to support diagnosis, prognosis and treatment decisions in Alzheimer’s disease and other neurodegenerative diseases. He argued that new biomarkers and disease-modifying therapies are increasing the demands placed on clinicians, who must decide how to interpret new tests and when to use them. PROMINENT’s answer is a digital platform that can bring together information from imaging, biomarkers, cognitive testing and other sources to provide decision support.
Petra Ritter of Charité spoke about the eBRAIN-Health project and the use of brain simulations as well as ‘digital twins’ (computational avatars built from data from real people and used to simulate brain activity, cognition and responses to interventions). Her presentation showed that such models depend on large amounts of highly personal data and therefore require strong protection, secure computing environments and careful regulatory support. In her examples, digital twins were used not only to simulate brain dynamics, but also to test possible stimulation settings for Parkinson’s disease before trying them in patients.
The final project presentation came from Alina Solomon of the University of Eastern Finland, who introduced the AD-RIDDLE project and its work on early detection tools, lifestyle interventions and personalised prevention. A central principle of the project is that one size does not fit all. This applies both to prevention strategies and to the way data are collected, harmonised and analysed across settings. She outlined the tension between highly standardised study protocols, which make pooled analysis easier, and real-world implementation, which introduces greater variety but makes retrospective harmonisation harder. AD-RIDDLE is organised around a modular toolbox rather than a single tool, with the aim of giving healthcare systems and clinicians validated options that can be combined according to local needs.
The webinar concluded with a panel discussion, audience Q&A and closing comments from Angela. In her recap, she returned to the value of connectivity and interoperability; not as abstract technical goals, but as practical ways of allowing datasets, platforms and researchers to work together. Looking back across the session, several themes stood out. Data sharing can strengthen dementia research, support better diagnostics, enable more sophisticated modelling and improve the evidence base for prevention and care. At the same time, the discussion made clear that progress depends on more than technology alone. Trust, communication, harmonisation, legal clarity and meaningful involvement of people with lived experience remain central to making data sharing both effective and acceptable in dementia research.
