Despite decades of research, people with epilepsy still face significant challenges. Getting the right diagnosis can take years. 30% of people with epilepsy still live with uncontrolled seizures. And tragically, there are 21 epilepsy-related deaths every week.
To develop solutions to these problems, scientists often need to involve people with epilepsy in their research to understand how their seizures are caused and what could be done to stop them.
But every one of the 600,000 people living with epilepsy in the UK is an individual, unique person. Something that works for one person, or a small group of people, might not work for everyone else. So how can we find solutions that will work for everyone?
The answer may lie in Big Data: bringing together rich data on huge numbers of people, and using new technologies to analyse the patterns which start to emerge. The more people whose data is included in research, the more robust and reliable the results. Big Data is also especially useful for research into rare conditions, which might otherwise be hampered by small numbers of people affected.
As computing power and data storage capacity increases exponentially, data scientists are frequently working alongside neuroscientists. Their work can reveal new insights into epilepsy which were hidden until now – and finally answer questions we’ve been unable to tackle for decades.
Dr Charles Steward knows first-hand the difference that Big Data is making. As a scientist, he worked at the Wellcome Sanger Institute, which famously contributed towards the Human Genome Project and decoded the genetic information in human DNA. But his work became deeply personal when his daughter was diagnosed with a rare and severe form of epilepsy called West syndrome.
Although gathering genetic data is much easier now than it was when Charles first began research, the bottleneck now is in interpreting the masses of information generated. But the opportunity of ‘genetic medicine’ holds great promise for people with epilepsy. Charles explains why in his blog next week, and discusses his personal journey in data research.
When a person experiences seizures, getting an accurate picture of what is causing them can be a challenge. Usually, this involves taking an electroencephalograph (EEG) to see how the person’s brain works during a seizure, though this can take months or years to record – and even then, the cause of their seizures might still not be clear.
But now mathematicians Dr Wessel Woldman and Professor John Terry are gathering and analysing data in a different way. They’re looking at how different parts of the brain are connected, using EEG recordings when their brain is in a ‘normal’ state rather than waiting for a seizure. They are then using mathematics to simulate how an individual’s brain goes from a normal state to a seizure. This technique may lead to more personalised assessment to diagnose a person’s epilepsy. In their blog later this month, Wessel and John explain how their approach could also help to understand why treatments can make some people seizure-free but not others.
Sudden Unexpected Death in Epilepsy, SUDEP, is a huge concern for people and particularly those with uncontrolled epilepsy and their families. But, by definition, the causes of these tragic deaths are unclear. In his research, Dr Michalis Kassinopolous is looking at parts of the brain that control the heart and breathing, how they ‘talk’ to each other, and why these deaths often occur during sleep. Michalis is using large numbers of MRI scans and EEG readouts, collected from six different epilepsy centres across the world.
“The use of global patient data is an essential component for the success of this study,” Michalis explains. “Pooling data from hospitals in different countries not only leads to a larger number of SUDEP cases to examine but also increases our confidence in the findings. This, in turn, means that we will be able to apply the findings to people living with epilepsy both in the UK and internationally.”
In his blog later this month, Michalis describes how his research will help to better understand and ultimately prevent SUDEP.
Big Data research is about more than just gathering masses of data. It’s about collaboration between people from different research fields, and between scientists and people affected by epilepsy. Epilepsy Research UK knows that bringing people together – those affected by epilepsy, innovators working in new technologies and researchers working on the answers – is how we can work together to solve our community’s biggest challenges.
That’s why Epilepsy Research UK is currently undertaking and leading the UK Epilepsy Priority Setting Partnership (PSP). The national survey is bringing together and collating the views of the entire UK epilepsy community – healthcare professionals, epilepsy charities, people affected by epilepsy, their families, friends and carers, and those bereaved by epilepsy. The data gathered from the UK Epilepsy PSP will help identify and prioritise areas of healthcare that can be improved by research and result in higher quality studies and increased investment. You can still complete the UK Epilepsy PSP survey here – it takes just 5 minutes to complete.
Keep an eye on the Research Blog, where Charles, Wessel, John, and Michalis will be sharing their perspectives on Big Data research and how it could transform how we diagnose and treat epilepsy.