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The Dementias Platform UK has today launched their Data Portal – a secure research environment, using the latest privacy preserving methods to provide researchers with high quality information and tools to facilitate collaborative research.

Among the Data Portal tools is the Cohort Finder, which allows cohort descriptions to be easily searched in order to identify and confirm topics for dementia research from over 30 well-established UK population, or cohort studies.  The Data Portal, gives access to a newly created informatics infrastructure, which is able to exploit and share a wealth of data, as well as enabling remote access to, and analysis of, large and complex datasets.

 

This will be a unique resource for dementias researchers. Although similar resources currently exist, this is the first to have a specific focus on dementia. The Data Portal will play a part in achieving the Prime Minister’s Challenge on Dementia 2020, by providing a platform which researchers from around the world can use to accelerate dementias research.

 

Previously, researchers looking for data to analyse to support their studies, could apply to various places to get routine clinical data. However, as that data was originally collected for other purposes (e.g. as part of a GP appointment or hospital visit) the data quality may not be as valuable as cohort data collected for the specific purpose of dementia research.

 

Traditionally, scientists would have had to physically read through each individual cohort details to see whether the data would be of benefit to them, and then apply to access that data one by one. If they wanted to compare with more than one cohort that would all have to be done manually and each cohort contacted separately to ask for their data. Taking time to gather and clarify information before comparison could begin.

 

Today sees the launch of the DPUK Cohort Finder, an online catalogue where approved researchers can easily browse to see what information is available to them (blood samples, urine samples, brain scans etc.), and even compare what is available across several cohorts. A profiling exercise has been carried out by DPUK staff at the University of Edinburgh to compile details of each cohort. A Cohort Directory and Cohort Matrix, summarising this information, are available on the DPUK website

 

Professor Craig Ritchie, from the University of Edinburgh, who led the data collation, said: “The existing cohorts in the UK are an unparalleled resource for advancing research. Engaging with cohorts will be a key strength of DPUK and fundamental to its success.”

 

A key aim for DPUK is to give researchers 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.

 

Professor Ronan Lyons, who has led the project from Swansea University Medical School said: “Providing access to complex data to a research team distributed across multiple universities will really bring team science to life.”

 

A rigorous set of policies ensures that high-quality information governance principles are maintained while still allowing researchers to be able to access data from over two million people without leaving their desk, ensuring rapid analysis of data and testing of hypotheses. Actual data and samples will be available in early 2016. To gain access to this researchers will submit project proposals outlining why their research is of public benefit and how it can be accelerated by using the Data Portal. The actual data will all be securely held, anonymous and regularly backed-up. For researchers, this is another advantage as governance issues, so vital when dealing with sensitive data, are all taken care of by DPUK.

 

Professor John Gallacher, Director of the Dementias Platform UK said: “Our aim is to make dementias research easier and faster for scientists so that we can progress research and ultimately find a way to treat this disease”.