Patient data has the power to revolutionise our approach to medical research and help improve human health. We’re funding scientists to use big data to tackle some of the biggest health challenges, including neurodegeneration. Here Ed Pinches, from Alzheimer’s Research UK, tells us why access to large data sets is so important in our fight against dementia.
It’s the hot topic, the subject dominating much of the latest news. Data. Your data. How it is used, how it is stored, who gets to access it, and for what purpose?
In her runner-up article for our 2017 Max Perutz Science Writing Award Nadine Mirza, a PhD student at the University of Manchester, explains why changes are needed to a routine test for diagnosing dementia, unbiased by language or culture, to prevent incorrect diagnoses.
Have you heard the saying “No ifs ands or buts”? Associated with grannies and teachers, you’d be hard pressed to find someone who hasn’t. It’s also a saying used in the ACE, a test implemented across the UK to detect dementia. An individual has to read the saying out loud with correct pronunciation. When directly translated into Urdu it loses meaning and becomes gibberish and reading out gibberish isn’t a smooth task. Even a fluent Urdu speaker might fail. But would we attribute that to dementia? Apparently, yes.
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.