Published on: 3rd August 2017
Case Study 12
Research lead: Ronan Lyons, Swansea University
Members of the Farr Institute CIPHER have helped develop the Dementias Platform UK (DPUK) Data Portal. The Data Portal is a pioneering platform that enables dementia researchers from around the world to access and examine data from over two million people, with an aim to drive research on potential new treatments that could halt or slow the condition.
Dementia is one of the biggest global health and social care challenges that we face. It is a condition with a wide range of symptoms that includes memory loss, difficulties with thinking, behaviour and the ability to perform every-day tasks. Dementia is caused when the brain cells degenerate more quickly than they would as part of the normal ageing process.
According to the World Health Organisation (WHO), 47.5 million people have dementia and there 7.7 million new cases every year. WHO estimate that the total global societal costs of dementia are around 604 billion US Dollars.
With a growing percentage of the population developing the disease, the Dementias Platform UK (DPUK) was founded and is part of the government’s challenge on dementia, launched in March 2012. It is a £53million pound public and private collaboration bringing together world leading experts with cutting edge technology to speed up progress in dementias research.
DPUK aims to drive research and develop knowledge that will fast-track scientific understanding, treatments and the prevention of the disease. It enables researchers to have better access to the wealth of information on health and lifestyle available in huge population studies. By examining this data, researchers can compare healthy people with people at all stages of dementias and can look at how this is affected by other conditions that people may have.
Working alongside DPUK Director Professor John Gallacher at Oxford University, the Farr team at Swansea University have developed the DPUK Data Portal – a remote access secure platform that enables dementia researchers from around the world to access and examine data from over two million people without leaving their desks. The DPUK Data Portal is housed at Swansea University and is hosted on a UK Secure eResearch Platform, a technology that was created by Swansea University based on the success of the Secure Anonymised Information Linkage (SAIL) Databank. SAIL is a world-class data linkage system that anonymously and securely brings together data for research and evaluation.
This ensures that any research carried out is done so within a secure environment that protects privacy and upholds concerns surrounding the use of sensitive data while ensuring research is ethically robust.
The Data Portal helps to identify dementias markers and their transition from the earliest signs of dementia symptoms. The Data Portal also facilitates the translation of this knowledge into the development of new therapeutic and public health interventions intended to delay or prevent the common late life dementias.
DPUK actively encourages leading researchers to work together, giving them better access, via the DPUK data portal, to the wealth of information on health and lifestyle- helping drive forward dementia research in the UK.
DPUK research aims to look for ways to:
For more information visit: www.dementiasplatform.uk
Enquiries to Sarah Toomey, Communications Officer, Farr Institute CIPHER, firstname.lastname@example.org