Alzheimer Europe sets out recommendations to improve data sharing in dementia research

Luxembourg, 23 February 2021 – At an online European Parliament workshop hosted by Deirdre Clune MEP (Ireland), Alzheimer Europe launched a new report “Data Sharing in Dementia Research”, which reviews recent changes in EU research policy and sets out recommendations to improve data sharing in dementia research.

In this report, Alzheimer Europe evaluates the legal and policy landscapes that dementia researchers have had to navigate since the launch of Horizon 2020 in 2013. The report identifies key barriers and enablers for data sharing. It maps the Horizon 2020 dementia research portfolio, assessing the scale of EU investment in dementia research and the use of clinical research data. Finally, it reviews recent surveys of researchers, research participants and patients, collating their perceptions and concerns regarding data sharing.

This report includes case studies from three projects: the US-based Alzheimer’s Disease Neuroimaging Initiative (ADNI), the European Medical Information Framework (EMIF) and the European Prevention of Alzheimer’s Dementia (EPAD) project. It also includes insights from participants and researchers, most of which are members of Neuronet’s Scientific Cooridination Board  who lead projects from the Innovative Medicines Initiative’s neurodegeneration research portfolio:

AETIONOMY – Professor Martin Hofmann-Apitius, Bioinformatics Group Leader, Fraunhofer Institute for Algorithms and Scientific Computing

EPAD – Professor Craig Ritchie, Director of Edinburgh Dementia Prevention, University of Edinburgh – Director of Brain Health Scotland

EMIF – Professor Pieter-Jelle Visser, University of Maastricht, Department of Psychiatry and Neuropsychology

ROADMAP – Professor John Gallacher, Director of Dementias Platform UK, University of Oxford

You can download the report (PDF) here: