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Posts tagged ‘data sharing’

How secure data sharing can help us treat dementia

Dementias Platform UK is a world-leading digital treasure trove, holding health data from millions of people, to help understand and treat dementia. Their one-stop shop gives researchers access to health data for dementia research and recognises contributions from researchers across the pay grade. Director Professor John Gallacher explains why it’s good for science and scientists.

Professor John Gallacher, Director of the Dementias Platform UK

Professor John Gallacher, Director of the Dementias Platform UK

In the UK, we’re fortunate to have a growing, rich resource of data from people that take part in studies which follow their health and lifestyle choices over time, known as cohort studies.

But there isn’t a single standardised way of storing and analysing this information. Without the right tools to search, interrogate and analyse this information, the data can seem impenetrable.

At Dementias Platform UK (DPUK) we have a solution – a place for researchers to access all the data they need to answer some of the toughest questions about dementia. We want the best minds to access the best data, regardless of their location.  Read more

Sharing rare data for a common cause

The information that gathers in our wake as we move through life and health centre or hospital waiting rooms is a powerful tool for medical research. Cecily Berryman tells us how a health emergency brought discussions about data science to the heart of her family.

Three years ago my husband suddenly became very ill. He needed emergency surgery to fix a tear in his aorta, the huge artery that carries blood as it pumps away from the heart. Afterwards the surgeon called it an ‘acute aortic dissection’ and mentioned it was likely to be a connective tissue disorder that has a genetic cause. Extensive testing revealed it was not a known disorder.

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Sharing data to speed up dementia research

By studying large groups of people over time, researchers are trying to spot early signs of diseases, including dementia. As large studies are huge undertakings it makes sense to check what’s already out there before setting up a new one – but this is no easy task. A new tool aims to help by collecting neurodegenerative disease cohort studies in one place. Professor Dag Aarsland, a leading dementia researcher, put the JPND Global Cohort Portal through its paces.

I study a specific type of dementia called dementia with Lewy bodies. Despite being the second most common form of neurodegenerative dementia, we know little about how it progresses. This information is important to inform diagnosis and research.

Collating existing data

In 2014, I led an international working group supported by the EU Joint Programme for Neurodegenerative Disease Research (JPND). It focused on solving some of the challenges of using cohorts – studies involving large groups of people – for research on dementia with Lewy bodies.

Our working group agreed that we need to combine data, collected in past and existing cohort studies, to define criteria for early diagnosis of this common type of dementia. To do this, we need a full view of what data is already out there, something that the new JPND Global Cohort Portal offers.

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