Data Sharing

EPND participates in multi-project public involvement event


Between 14 and 16 November, over 40 members of the Advisory Boards of six EU-funded dementia research projects collaborated in a series of multi-project consultations. These Advisory Boards are composed of people affected by dementia: people living with different types of dementia, individuals who are at risk of dementia or interested in brain health, and people who care for or support people with dementia. Convened and moderated by the Public Involvement team at Alzheimer Europe, the Advisory Boards provide valuable input and feedback to guide and improve research, ensuring the needs, perspectives and values of people affected by dementia are taken into account.

Consultations organised on 14 November focused on topics relating to brain health and dementia prevention, involving researchers from the EU-FINGERS, Lethe and Multi-MeMo projects. On 15 November it was the turn of EPND and the ADIS project, with consultations on consent – consent for primary research, and consent for data and sample sharing and reuse. These topics are particularly important for EPND, given our goal of creating a platform for data and sample sharing from neurodegenerative disease research studies.

"People are interested in giving something back! I have always been interested in science. If I could help research by sharing data then I would like to help, and do something for the next generation."

- Hans* (person living with dementia)

The consultations were focused on identifying the views, concerns and preferences of people affected by dementia in relation to informed consent forms, processes and language. Advisory Board members underlined the importance of participating in research and data sharing, emphasising the need for greater awareness on the value of research participation and the need for data sharing and reuse to maximise the impact of research. Frank views were exchanged on terminology, process and design of informed consent forms, with a strong focus on using language that is precise and accurate but also understandable.

Many thanks to all Advisory Board members for their active engagement and contributions!

To hear from the members in their own words, view a video clip here: