On 15 December 2025, Alzheimer Europe took part in the Joint Heads of Medicines Agencies (HMA) / European Medicines Agency (EMA) multi-stakeholder workshop on patient registries for Alzheimer’s disease, held in Amsterdam and online. The workshop brought together regulators, registry holders, researchers, industry representatives, health technology assessment bodies, payers and patient organisations to explore how patient registries can better support regulatory decision-making in Alzheimer’s disease. Alzheimer Europe was represented by Angela Bradshaw, Director for Research, and Lukas Duffner, Project Officer. During the opening session, Angela Bradshaw introduced Stuart Dougall, a member of the European Working Group of People with Dementia. Stuart gave a speech on the lived experience of Alzheimer’s disease, highlighting the potential value of data sharing, concerns regarding confidentiality and privacy, and the need for hope, choice and fairness.
Lukas Duffner participated in a multi-stakeholder panel discussion on real-world evidence, sharing findings of Alzheimer Europe’s public poll on research participation and data sharing. There was a strong representation from national Alzheimer Associations at the Workshop in Amsterdam, including Andy Heffernan (Chief Executive at the Alzheimer Society of Ireland), Kevin Rabiant (Director for Research at France Alzheimer), Mario Possenti (Secretary General of Federazione Alzheimer Italia), Renè Thyrian (member of the Board of Deutsche Alzheimer Gesellschaft) and Wiesje van der Flier (Executive Director of Alzheimer Nederland). The workshop focused on identifying evidence gaps that could be addressed through real-world data, defining core data elements for Alzheimer’s disease registries, and discussing key issues related to patient consent, data governance, quality assurance and interoperability. Breakout sessions addressed the use of registries for safety monitoring, long-term treatment strategies and prevention of symptomatic Alzheimer’s disease.
Discussions highlighted how disease-specific patient registries can be more than tools for monitoring safety or use medicines, with the potential to strengthen health systems by identifying gaps in diagnosis, follow-up and access to care across Europe. However, participants noted that there are challenges linked to fragmentation and integration with routine clinical workflows. Registries should also collect high-quality data on outcomes that are meaningful to people living with dementia, while minimising burden for patients and carers. This requires the considered involvement of people with lived experience in the design and governance of registries. Discussions from the workshop will inform future recommendations on how patient registries can be used more effectively to support the evaluation of the safety and effectiveness of Alzheimer’s disease treatments in real-world settings.
