New Epi-Scot Study will provide much-needed information on childhood epilepsy
Published: 3 March 2025
A new nationwide study, focused on children and young people with epilepsy, will provide doctors and families with vital new information on living with the neurological condition
A new nationwide study, focused on children and young people with epilepsy, will provide doctors and families with vital new information on living with the neurological condition.
The new Epi-Scot (Epilepsy, Precision Investigation, Stratified Care and Outcomes of Therapy) Study will be open to all children in Scotland, aged 16 years-old and under, who are given a diagnosis of epilepsy on or after 1 March 2025.
Led by the University of Glasgow alongside NHS Greater Glasgow & Clyde, the study is the first of its kind to take a more detailed look at the lives and experiences of children who have epilepsy. Researchers will work with young people and their families, as well as doctors, to piece together a fuller picture of what living with childhood epilepsy looks like. This will include assessing how well medications are working, assessing the impact of childhood epilepsy on everyday life and looking at underlying causes.
In order to gather as much information about the condition as possible, the team will use up-to-date diagnostic genetic testing techniques and gather data from multiple sources on each participant. In addition, parents will be asked to keep regular seizure diaries with a user-friendly online tool, and families will be supported by the research team as they take part in the study.
As researchers are keen to understand the impact different medications may have, those who already have an epilepsy diagnosis before 1 March are not eligible to join the study. Although, researchers are keen to reassure families already living with the condition that any findings from the study will ultimately benefit all young people with epilepsy.
Epilepsy is a condition in which people have bursts of extra electrical activity in the brain, leading to epileptic seizures. It is the most common serious neurological condition in childhood, affecting around 112,000 children and young people in the UK. Epilepsy can start at any age, but most often starts either in childhood, or in people over 60 years-old.
In addition to the main symptoms of the disease, which include different types of seizures, children with epilepsy have a significantly increased risk of learning, behavioural, and psychological difficulties. Sadly, they are also seven times more likely to die during childhood than their peers.
Although many new anti-seizure medicines have been developed, outcomes for young people with epilepsy have not improved in the past 30 years – this may be partly because research into treatments tends to focus on adults living with the condition. Indeed, despite overall advances in the treatment and understanding of the condition, many children and young people with epilepsy have difficulty controlling seizures and experience challenges with learning and behaviour. Currently, up to one third of children with epilepsy continue to have seizures no matter how many treatments are tried.
Now, researchers leading the Epi-Scot study plan to take a different approach by focusing on the causes and risk factors of childhood epilepsy, in order to transform outcomes for young people living with the condition.
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.”
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 minimize 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.”
Enquiries: ali.howard@glasgow.ac.uk or elizabeth.mcmeekin@glasgow.ac.uk
First published: 3 March 2025