The “Dementia Research Participation and Data Sharing in Europe” report examines perspectives on research participation and data sharing from people with dementia, carers, the public and key stakeholders across Europe, drawing on scientific literature, a large-scale European public opinion survey and Public Involvement activities, alongside insights from researchers, clinicians, funders and regulators. It finds generally positive attitudes, with motivations such as helping others, contributing to scientific progress and learning more about dementia, but notes unequal opportunities and persistent barriers including lack of awareness, time constraints, perceived risks and insufficient information. While data sharing is widely seen as essential for advancing dementia research, challenges such as fragmented systems, complex procedures and privacy concerns remain, highlighting the importance of trust, clear communication, participant involvement and supportive infrastructures.
