New study aims to transform epilepsy care for Scottish children

A major new study is set to revolutionise the care and treatment of children with epilepsy in Scotland.

Led by the University of Glasgow and NHS Greater Glasgow & Clyde, the Epi-Scot (Epilepsy, Precision Investigation, Stratified Care and Outcomes of Therapy) Study will follow children diagnosed with epilepsy from 1 March 2025 onwards, gathering vital new data on the condition.

The study, the first of its kind in Scotland, will track how epilepsy affects young people’s daily lives, how well medications work, and explore potential underlying causes.

Researchers will use advanced genetic testing and real-time seizure tracking to build a more detailed picture of the condition.

Families taking part will be supported by the research team and asked to log seizures using an easy-to-use online tool.

Stagnant for 30 years

Epilepsy is the most common serious neurological condition in childhood, affecting around 112,000 young people in the UK.

It can cause seizures and has been linked to learning, behavioural, and psychological difficulties.

Children with epilepsy are seven times more likely to die in childhood than their peers.

Despite advances in treatment, outcomes have remained stagnant for 30 years, with up to a third of young patients continuing to experience seizures no matter how many treatments they try.

'New therapies'

Dr Joe Symonds, lead researcher on the Epi-Scot Study, said: “This research will provide important data on how common genetic forms of epilepsy are, and what these look like in terms of seizures, development, and associated medical problems.

"This will allow families to be given accurate information early on in diagnosis and will be invaluable to scientists developing new therapies, so they can assess whether any new treatments are effective.”

'Every seizure felt like a hammer blow'

12 year-old Tommy Wyllie from Glasgow was diagnosed with focal epilepsy when he was just two years-old after starting to have frequent seizures.

It took three years of trying a range of different medications and doses to try and control his condition before doctors finally found the right treatment for Tommy, which he now takes regularly to control his symptoms including significant seizures lasting more than five minutes.

Tommy’s mum Tania explains that he “manages his symptoms very well, unless he feels unwell”. Tommy also regularly suffers from headaches, some episodes of déjà vu, increased appetite and emotional outbursts.

Tania said: “Living with childhood epilepsy as a parent can be very isolating, as in the beginning we didn't know anybody in the same boat as us.

"You are constantly scared of the next seizure, trying to control everything around your child to minimise possible triggers as well as trying to maintain a balanced family life in between medical appointments.

"In the beginning every time Tommy had a seizure his medications changed either in type or doses – it was a reactive approach.

"Every change in meds gave us both hope and fear at the same time. Every seizure felt like a hammer blow that it took a few days to recover from.

“I really hope this study achieves its scope of reaching lots of families that are living the same type of situation as us, to find the best treatment for each child, but sooner.

"More kids, means more data, more data means more information for a quicker understanding of all the symptoms, effects and outcome of the epilepsy drugs.”

The Epi-Scot team hopes their research will lead to more effective, personalised treatments for children in Scotland and beyond, ultimately offering new hope for families living with epilepsy.

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