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.
Alzheimer Europe gratefully acknowledges the support of GatesVentures for this report.
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Alzheimer Europe (2020). Dementia in Europe Data sharing in dementia research – the EU landscape. ISBN 978-2-919811-00-7, Luxembourg, Alzheimer Europe