Research Report 2016-17

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.

Over the past year we have initiated 11 new research projects and been responsible for 88 peer-reviewed publications of primary research, as well as a further 31 publications of chapters, reviews and commentaries of expert opinion. As a wider research unit, we continue to work towards improving the recognition of epilepsy as a healthcare priority in every part of the world.


Our work is driven by a commitment to improving the lives of children and young people with epilepsy and associated conditions.

Over the past year, we’ve made significant progress:

  • We initiated 11 new research projects and contributed to 88 peer-reviewed publications, plus 31 expert reviews and chapters.
  • We hosted our 7th Paediatric Epilepsy Research Retreat, bringing together global experts to share insights and shape future research.
  • Our research is guided by six strategic goals, including understanding causes, improving treatment, and supporting education and family wellbeing.

Key Projects and Achievements

  • EPIPEG: We identified new genes linked to early onset epileptic encephalopathy, helping tailor treatments sooner.
  • Landau Kleffner Syndrome: We found GRIN2A mutations in 12% of screened patients, aiding earlier diagnosis and intervention.
  • Dravet Syndrome Studies: We explored links between heart rhythm and SUDEP, aiming to improve monitoring and care.
  • Ketogenic Diet Trials: We tested its effectiveness in infants and developed new MCT-based products to improve tolerability.
  • Cannabidiol Research: Our studies showed seizure reduction in severe epilepsy cases, supporting its use as add-on therapy.
  • ABLE Tool: We developed a screening tool for teachers and parents to identify learning and behavioural needs in children with epilepsy.
  • WINS Project: We’re gathering views from children, parents and teachers to create school guidelines for epilepsy support.

Our Collaborative Approach

  • We work closely with UCL GOS Institute of Child Health and Great Ormond Street Hospital, forming a unique multidisciplinary team.
  • Our network spans over 30 universities and research centres worldwide.
  • We’ve supervised over 40 PhD projects, nurturing the next generation of epilepsy researchers.

Looking Ahead

  • We’re committed to translating research into practical outcomes for young people and families.
  • We continue to campaign for joined-up services, better education support, and personalised care.
  • Our work is made possible by generous support from charities, foundations, and individuals.

We believe that every child with epilepsy deserves the best chance at a full and happy life. Through research, collaboration and advocacy, we’re working to make that vision a reality.