Young Epilepsy: Research Report 2019

Young Epilepsy have released their 10th annual Research Report, showcasing the world-leading research with which they are involved. As one of their four key offers, Young Epilepsy’s research aims to establish better outcomes for children and young people, driving early diagnosis and intervention in all aspects of childhood epilepsy.

The new Research Report showcases the incredible work across the Programme during 2019; highlighting 13 new projects, 20 active projects and over 160 research publications across their 6 research goals:

  • Find the causes of childhood epilepsy
  • Understand the effects of childhood epilepsy beyond seizures
  • Improve diagnosis and treatments
  • Understand how childhood epilepsy affects learning and education
  • Use research to make life and services better for children and families
  • Develop the next generation of childhood epilepsy experts

This report features a spotlight on a truly innovative project – a world first, which will change the UK’s diagnostic and surgical evaluation imaging options for childhood epilepsy. The MEG Project is a collaboration which will culminate in the world’s first functional magnetically shielded room and wearable OP-MEG system at Young Epilepsy’s headquarters in Surrey. It will be the first MEG system accessible to children and people with complex needs without sedation. MEG measures brain activity using the tiny changes in magnetic fields produced by brain cells when they communicate. Until now, this type of scan is rarely used because there are few available on clinical sites, and standard technology has required individuals to remain still for long periods of time – a challenge for young children and those with complex needs. The new system is wearable and is in a magnetically shielded room which means individuals can move about - much more accessible for children or those with complex epilepsy.

Epilepsy affects 112,700 young people in the UK and is one of the most common serious long-term conditions in childhood. Epilepsy is symptomatic of a complex spectrum of conditions and no two experiences will be exactly the same. The common feature of these conditions is being prone to seizures – which are universally called ‘epilepsy’ or ‘the epilepsies’. The epilepsies, and seizures themselves, are varied in type, severity, frequency and cause.

Beyond the seizures, and likely due to the underlying cause, there are higher rates of cognitive, developmental and behaviour disorders among young people with epilepsy, who are also four times more likely than their peers to experience mental health problems. Many of these problems remain unrecognised or unsupported and result in academic underachievement or school exclusion. There sadly remains significant social stigma about the condition and many young people feel isolated and anxious.

Young Epilepsy is at the forefront of advocating with young people for positive change in attitudes, across society, and towards greater understanding of the condition. We campaign for improved specialist support for children, young people and their families in our national health, education and social care systems.

Amy Muggeridge, Research Manager at Young Epilepsy, said:

“We cannot hope to make lasting, meaningful change without services governed by defensible evidence in all disciplines of our work. Our world-leading research provides this evidence. It is central to all that we do.”

Professor Helen Cross OBE, The Prince of Wales’s Chair of Childhood Epilepsy, said:

“The collaboration across institutions has enabled us to develop a truly comprehensive research programme over the past 10 years – it is a privilege to work with those involved.”

Find out more about our Research Report here