New paper on the affordances of clinical research participation
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 including Craig Ritchie.
“Our philosophy in EPAD was to view the Longitudinal Cohort Study (LCS) data and samples as gifts from the people who participated in the LCS. The LCS research participants got involved in EPAD because they wanted to advance the knowledge of Alzheimer’s disease. As custodians of their data, it is therefore our responsibility to ensure this data generates as much knowledge as possible. This means making the data openly accessible, at scale, and in the long-term. During the four years of the LCS, data on a wide range of cognitive, biomarker and neuroimaging outcomes was gathered. We also collected over 100,000 biosamples, which are securely stored in the EPAD biorepository. Together, these assets will continue to generate new knowledge on the causes, diagnosis and prevention of Alzheimer’s disease.
The EPAD cohort recruited over 2,000 individuals across the risk spectrum of Alzheimer’s disease in Europe. However, there is often a disconnect between research cohorts and the general population. By their nature, cohorts tend to be more homogeneous, and do not always capture the diversity present in society. Conversely, data collected in real-world clinical practice can lack measures of value for dementia research – particularly in mid-life age groups, a key target group for dementia prevention. To look beyond the treatment of established disease, and towards the maintenance of brain health, we now need better mechanisms to collect, analyse and share real-world data across the lifecourse. This underpins the establishment of Brain Health Services as is the case through Brain Health Scotland, a Scottish Government backed initiative which commenced in 2020. This will pave the way for early detection, risk profiling and personalised dementia prevention, empowering people to reduce their risk of dementia through positive preventive measures.”, said Craig Ritchie.
Alzheimer Europe gratefully acknowledges the support of GatesVentures for this report.
You can download the report (PDF) here: http://bit.ly/DataSharing_AE
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