Research Report 2022

Young Epilepsy coordinates and funds research into the causes, treatments and impact of all aspects of childhood epilepsy. We want to secure the best outcome for everyone affected by the childhood epilepsies and we know the best way to do this is through research.

During the past year, our research programme has continued to conduct over 40 active projects. Despite the ongoing impact of COVID-19 on all our lives, wee initiated seven new research projects. 

These projects focussed on a vast array of topics, including the development of web-based interventions for staff currently supporting children with epilepsy, the advancement of cutting-edge neuroimaging techniques, and a six-year follow-up study investigating the neurodevelopmental status of childen who presented with epilepsy in the first year of life.

Whilst these new projects are just a snapshot of the entire research programme; their diversity demonstrates our commitment to encouraging all areas of epilepsy research.

Whilst we continue to conduct research into understanding and treating epilepsy, we recognise the importance of providing outstanding support through educational, psychosocial, and service-based research.

At Young Epilepsy, we are proud to lead the UK’s largest paediatric epilepsy research programme in partnership with Great Ormond Street Hospital and UCL’s Institute of Child Health. Our mission is to improve diagnosis, treatment, and support for children and young people with epilepsy.

Research Highlights

  • Over 40 active research projects in 2021–22, spanning medical, educational, and psychosocial domains.
  • Published 89 peer-reviewed studies and 26 expert reviews.
  • Hosted our largest-ever Research Retreat with 157 attendees.

Key Projects

  • OPM-MEG Diagnostic Suite: A child-friendly, wearable brain imaging system to improve early diagnosis and surgical planning.
  • MICE Project: A national trial testing psychological therapies for children with epilepsy and mental health challenges.
  • Gene-STEPS: Rapid genetic testing to improve outcomes for children with early-onset epilepsy.
  • PACE Study: Investigating physical activity levels and barriers for children with epilepsy.
  • Epilepsy in Schools: Developing web-based training for teachers to better support students with epilepsy.

Impact and Goals

Our research contributes to six strategic goals:

  1. Understanding medical causes of epilepsy (25%)
  2. Understanding developmental and behavioural impacts (21%)
  3. Improving diagnosis and early intervention (28%)
  4. Supporting learning and education (6%)
  5. Enhancing family support and services (16%)
  6. Building a multidisciplinary research network (4%)

Patient and Public Involvement (PPI)

  • 140 members in our E-CURe network of parents, carers, and young people.
  • PPI ensures our research reflects real-life needs and experiences.

Top 10 UK Epilepsy Research Priorities

Identified through a national survey, priorities include:

  • Preventing epilepsy-related deaths
  • Predicting and preventing seizures
  • Understanding drug-resistant epilepsy
  • Improving quality of life and mental health
  • Exploring personalised medicine and AI