Research Report 2015/16

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.

Our Strategy at Young Epilepsy

  • We aim to reduce the impact of epilepsy on children and their families, and improve long-term outcomes.
  • Our research is collaborative, involving Young Epilepsy, UCL GOS Institute of Child Health, and Great Ormond Street Hospital.
  • We focus on understanding the causes of epilepsy, improving diagnosis, and developing better treatments.
  • We’re working to:
    • Understand how epilepsy affects brain development and behaviour.
    • Discover the genetic and structural causes of seizures.
    • Evaluate early interventions like surgery and education support.
    • Improve learning outcomes for children with epilepsy.
    • Train and support researchers to build a strong academic community.
    • Reduce the overall burden of epilepsy through our programmes.

Research Updates

  • We’ve launched several exciting projects:
    • EPIPEG: Studying babies under 12 months to improve diagnosis and treatment.
    • Genetics of Epileptic Encephalopathy: Identifying new genes linked to severe epilepsy.
    • Landau Kleffner Syndrome: Investigating genetic causes of language and seizure disorders.
    • Sleep and Memory: Exploring how sleep affects learning in children with epilepsy.
    • EDIBLE Trial: Testing if a special diet before surgery improves outcomes.
    • KIWE Trial: Comparing ketogenic diet vs. medication in infants.
    • Cannabidiol Study: Assessing the safety and effectiveness of CBD in severe epilepsy.
    • ICE Project: Creating a new, person-centred care model for children and families.
  • We’re also developing tools like ABLE, a screening instrument for behavioural and learning issues in epilepsy.
  • Our work is supported by generous funders and involves over 100 researchers and clinicians.

Research Retreat 2016

  • We hosted our sixth annual Paediatric Epilepsy Research Retreat in January 2016.
  • Over 100 researchers from across the UK and internationally attended.
  • The retreat was moderated by Professor Lieven Lagae from Belgium.
  • We shared updates on 26 projects under themes like causes, brain networks, treatments, and outcomes.
  • It was a great opportunity to connect, share ideas, and inspire future research.
  • Feedback from attendees highlighted the retreat’s open, collaborative atmosphere and its value in shaping research.