The report, titled 'Data sharing in dementia research – the EU landscape', evaluates the legal and policy landscapes that dementia researchers have had to navigate in recent years, identifying key barriers and enablers for data sharing.
In his preface to the document, Jean Georges, Executive Director of Alzheimer Europe, says: 'In our 2019 report, "Estimating the prevalence of dementia in Europe", we showed that the number of people with dementia in Europe is likely to double by 2050, increasing from 9,780,678 to 18,846,286 in the wider European region. However, despite its increasing incidence, and high health and social care cost, research on dementia receives a disproportionately low amount of funding compared to other disease areas. As a result, there is an urgent need to maximise the utility of data from dementia research.
'Data sharing represents an important step towards meeting this need, and could help increase our understanding of the causes, treatment, prevention and care of dementia. However, there is still much to do to improve data sharing in dementia research – in particular, for clinical studies, where data sharing is not yet common practice.'
Writing in the report, DPUK's Director, Professor John Gallacher, describes how the DPUK Data Portal is 'democratising science'. He says: 'The DPUK Data Portal was developed in collaboration between the DPUK public-private partnership and research teams leading dementia cohort studies in the UK. As a data repository, the DPUK Data Portal facilitates access to data from over 3 million participants in studies such as Generation Scotland, LBC (Lothian Birth Cohort) 1936 and GERAD (Genetic and Environmental Risk in Alzheimer's Disease). Data from these cohorts cover a broad spectrum of variables, including genetic test results, brain imaging data and neuropsychological assessments of memory and brain function. Once access to data is approved, researchers are able to work with the curated data in a secure, remote-access environment, allowing them to develop new research questions and test or validate novel hypotheses on dementia.
'The DPUK Data Portal was built to democratise science. By providing remote access to data from 42 cohorts (n>3.4m) anyone, from Botwana to Brussels, can access some of the world's best data. All that's required is a good idea, internet connectivity, and an academic or industry email. Our data discovery tools and streamlined access procedures enable rapid access decisions (median time to decision: 23 days), with most datasets and most computational facilities, including analytical software, being free at point of use. Bona fide researchers work on approved projects within a secure and fully auditable multi-modal environment. Findings, but not data, may be exported for publication.
'Integrating imaging, genomic and health data is challenging, even for experts. So our datathon and summer school programme, targeting early-career researchers, is designed to introduce up-and-coming analysts to good data management and rigorous longitudinal analysis.
'In a spirit of collaboration, DPUK is working alongside data platforms around the world, including Dementias Platform Korea, Dementias Platform Australia, EMIF-AD, GAAIN, IALSA, SCAI, Cohen Veterans Bioscience, the Krembil Brain Institute, and ADDI, to create a global data alliance for dementia research.'