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To better understand and treat the diseases that cause dementia, researchers rely on volunteers who, year on year, undergo a variety of medical tests. Now, for the first time, anonymised biological, lifestyle, and behaviour data collected from these medical volunteers is accessible in the Dementias Platform UK data portal – an online resource for disease researchers across many different disciplines.

Rapid access to rich data

The DPUK data portal brings together the rich data in UK’s population or ‘cohort’ studies. Now with six studies’ data online, the resource will scale up to host brain images, behavioural data, cognitive data and genetic data from over 20 studies as more and more  come online in the coming months.

Researchers can now request access to data from ELSA, CamPaIGN, ICICLE-PD, Cam-CAN, Generation Scotland, OPDC Discovery, CFAS and CFAS II through a shorter central process in the portal, avoiding the need for separate, lengthy data access procedures for these cohort studies. For the cohort study managers, the portal provides a digital audit trail of where the data are (Swansea); it shows the approvals granted and its use through the authenticated personal login.

The free-to-access resource means that current research practices of sending and working with large datasets offline may soon become a thing of the past. The suite of analysis tools in the portal’s virtual desktop means that on top of accessing and storing cohort data, researchers conduct their analyses within the secure online environment. The result is a more secure handling of the anonymised cohort data that is so valuable to researchers.

As more and more of the UK cohorts come online, we will see how the data portal transforms the scale of dementia research that can be undertaken.
John Gallacher, DPUK Director 

 

Chris Orton, DPUK’s portal development lead, says: ‘we hope that the DPUK data portal will be evidence that cohorts which make use of world-leading analysis infrastructure are fundamental for the advancement of epidemiology and experimental medicine – and create a use case of unprecedented scientific collaboration.’

Any of the UK population studies are already valuable research data. Now that scientists have the technology available to combine and enhance their study data with data from the UK’s other population studies – a total of 2 million participants’ data – the value of an individual cohort study’s data becomes even greater.