March Epilepsy Blog UK

Patient data research
Revolutionising how we view epilepsy

Research using patient data has the potential to revolutionise how we diagnose and treat epilepsy. This month, we’ll be learning more about four projects supported by Epilepsy Research UK which are using pioneering techniques to help stop epilepsy interrupting lives.

We live in a world filled with data. From social media to online banking, weather forecasts and takeaway deliveries, it’s easy to forget how data makes many aspects of modern life possible.

Data also makes a vital contribution to our health. During the pandemic, scientists used health data to track the spread of the virus and identify new treatments. In a similar way, research using data from people with epilepsy has the potential to stop the condition interrupting lives, for good.

We urgently need this. Despite decades of research, people with epilepsy continue to face huge challenges. Getting a diagnosis can be a long process and getting the right treatment can be equally difficult. One in three people with epilepsy have seizures that cannot be controlled by medication. And shockingly, there are 21 epilepsy-related deaths every week, leaving families and friendships broken.

Last month, we looked at early-stage research in the lab, and the month before that, at clinical research in hospitals. This month, we’ll be hearing from scientists who are using data from people with epilepsy, funded by Epilepsy Research UK thanks to your donations.

Dr Charles Steward knows first-hand the difference that patient data research can make. He contributed towards the Human Genome Project, which decoded the genetic information in human DNA. But his work became personal when his daughter was diagnosed with West syndrome, a rare and severe form of epilepsy.

It’s much cheaper and quicker to read a person’s DNA today than it was when Charles first became a scientist. However, interpreting this huge amount of genetic data gathered remains a bottleneck in the field of genomics. Nonetheless, the opportunity of ‘genetic medicine’ holds great promise for people with epilepsy, and in his blog next week, Charles explains why.

Dr Kathryn Bush is using population-level health data to study health inequalities. She wants to find out why people living in the most deprived areas are more likely to develop epilepsy than those in less deprived areas. Kathryn’s work also aims to uncover why people with epilepsy die younger on average than people without.

To try and answer these questions, Kathryn will be examining population health data and other information sources during her Epilepsy Research UK Emerging Leader Fellowship. In her blog later this month, Kathryn will explain how this could help prevent people from getting epilepsy and from dying young with the condition.

Mathematicians Dr Wessel Woldman and Professor John Terry are using data to transform how epilepsy is diagnosed. Normally, the diagnosis process involves capturing a seizure with an electroencephalograph (EEG). However, this may take months, and it might not even give a clear diagnosis.

Instead, Wessel and John are analysing EEG recordings from people when their brain is in a ‘normal’ state, rather than waiting for a seizure. Their research may lead to more personalised assessments 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.

Later this month, the first Epilepsy Research UK & Angelini Pharma Innovations in Healthcare project will be announced. We’ll hear from the awardee of this strategic partnership about their plans to use large-scale NHS clinical data records to understand and predict important clinical outcomes in refractory epilepsy.

All these researchers are using cutting-edge tools to analyse huge amounts of data. But we cannot forget that this data is not just information stored on a computer. It’s given, with permission, by people affected by epilepsy, which makes it valuable and worthy of respect.

Just as data is changing various aspects of our daily lives, patient data is going to revolutionise how we view epilepsy, and how we diagnose and treat the condition. Alongside research in the lab and hospitals, data research is helping to create a world where people can live a life free from epilepsy.

Dr Kathryn Bush and Prof John Terry spoke at our recent Shape Network Live conference – a meeting for Shape Network members to find out more about the different types of research into epilepsy. 

The conference was recorded, and we are delighted to make the screening of the lab research session available later this month. Sign up to our E:Bulletin to find out how you can watch it.  

If you’re interested in attending a future Shape Network event you can join the network here. 

Promoting, encouraging and funding research into the causes, diagnosis and clinical management of people with epilepsy and associated conditions

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Developing the next generation of epilepsy researchers and capacity building the epilepsy research environment with our new Doctoral Training Centres

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Accelerating innovations for people with epilepsy by supporting research that will influence clinical practice and health policy

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