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Insight blog: Posts tagged with data sharing

Stories about the people, science and research of the Medical Research Council.

How secure data sharing can help us treat dementia

29 Aug 2018

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.  [...]

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Sharing rare data for a common cause

10 Jan 2018

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

1 Nov 2017

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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New tools help show what genes do

3 Nov 2016

To understand the roles of different genes, Dr James Brown and colleagues at the MRC Harwell Institute are part of a project trying to find out what every single mouse gene does. To help speed things along, they have developed new software to analyse images of mouse embryos.

black mouse
Our 20,000 genes provide the instructions for everything our body does. But we don’t yet know what each one is responsible for. We share 90 percent of our genes with mice so finding out their ‘function’ could help us understand more about human disease. [...]

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Beyond open: making your data accessible

29 Jul 2016

Sense about Science have recently set up a new website to help people make sense of children’s heart surgery data; Joanne Thomas and Emily Jesper from the charity explain why and how they made that data make sense.

Two percentages are shown being weighed against each other with the headline 'NO!''

A higher survival rate does not mean a better hospital. © PRAIS2 website project team 2016

At Sense about Science, we strongly believe that patients and families should be involved in how medical research is conducted and communicated. So when Dr Christina Pagel asked us to help codevelop the Understanding Children’s Heart Surgery Outcomes website, and include people who need this information in the project, we didn’t hesitate. [...]

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UK Biobank: looking at the whole person

14 Apr 2016

Today, the UK Biobank has launched the largest body scanning project in the world. Funded by the MRC, Wellcome Trust and British Heart Foundation, the biobank will scan 100,000 people to provide images of their brains, hearts, bones, carotid arteries and abdominal fat. Head of the Division of Brain Sciences at Imperial College London Professor Paul Matthews is one of the academic experts who have been supporting UK Biobank to create this resource and he tells us how it could prove invaluable to all areas of medicine.

Professor Paul Matthews

Building the bank
Over 10 years, the UK Biobank has recruited and gathered a wealth of high quality information from 500,000 people across the country. These people have donated blood, urine and saliva samples, provided detailed health, lifestyle and environment information and agreed to allow the biobank to follow their GP and hospital records throughout life.

Now we will be adding sophisticated imaging to enrich our understanding of the origins and progression of the major diseases of later life. [...]

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Data sharing: a patient perspective

19 Feb 2015

Genomic data from patients is a rich source of information for research into how our genes affect our health and here at the MRC we are keen to harness its power as part of our vision for informatics research. But what do patients think about their genomic data being shared for research? Here Alice Hazelton, Public Engagement Officer for Genetic Alliance UK, writes about the charity’s efforts to find out.

Families from SWAN UK tour the Wellcome Trust Sanger Institute

Families from SWAN UK tour the Wellcome Trust Sanger Institute (Image copyright: Genetic Alliance UK/Joshua Tucker)

 

Genomic information has the potential to transform healthcare. Researchers are continually learning more about the genome and the genetic basis of disease and as the cost of genome sequencing technologies and analytics tools fall, more and more research will become possible.

This will help us to achieve a greater understanding of how our genes affect our health and develop new diagnostic tools, screening methods and treatments for some conditions. The sharing of patient data will play a crucial role in this. [...]

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