Skip to content

Posts tagged ‘data sharing’

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.

Read more

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.

Read more

New tools help show what genes do

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. Read more