Led by the Prince of Wales’s Chair of Childhood Epilepsy, and Young Epilepsy Trustee, Professor Helen Cross OBE, our research partnership with Great Ormond Street Hospital and the University College London Great Ormond Street Institute of Child Health, works to 3 key Workstreams:
Workstream 1: Understanding Childhood Epilepsies
- We explored the genetic basis of epilepsy, including rare conditions like Sunflower Syndrome and Epilepsy of Infancy with Migrating Focal Seizures (EIMFS), aiming to improve diagnosis and treatment.
- Projects like Gene-STEPS and EPIPEG focused on early genetic testing to shorten the diagnostic journey and improve outcomes.
- Innovative models using zebrafish and stem cell-derived organoids helped us study epilepsy at the cellular level.
Workstream 2: Outstanding Treatments
- We supported trials of new therapies, including:
- Deep Brain Stimulation (CADET Trial) for Lennox-Gastaut Syndrome.
- Ketogenic Diet in Infants (KIWE) to compare dietary therapy with medication.
- Brivaracetam (PETITE Study) for newborns with drug-resistant seizures.
- Imaging advancements like 7T MRI and EEG-fMRI are helping us detect brain abnormalities more accurately.
- Machine learning tools (MELD and MAST trials) are being developed to assist epilepsy surgery planning.
Workstream 3: Outstanding Support
- We launched the E-Cure PPI Network, giving families a voice in shaping epilepsy research.
- Projects like WINS and PACE investigated how epilepsy affects education and physical activity, aiming to improve support in schools and communities.
- The MICE project tested telephone-based mental health support for children with epilepsy, showing promising results.
- We’re developing better tools to assess children with profound intellectual disabilities and complex epilepsy.
Global and Collaborative Impact
- The EPInA project in Africa is improving epilepsy diagnosis, treatment, and public awareness in Ghana, Kenya, and Tanzania.
- The PREVENT study in India aims to reduce epilepsy caused by birth-related brain injuries through improved maternal care.
- We’re proud to be part of EpiCARE, a European network improving care for rare and complex epilepsies.
Funding and Future
- Our research programme secured over £25 million in funding between July 2019 and June 2020.
- This funding supports our mission to lead the world’s largest paediatric epilepsy research unit.
- We remain deeply grateful to our funders and collaborators for helping us drive forward life-changing research.
