Background and aim

A large number of children who develop epilepsy under the age of twelve months unfortunately do not get a clear diagnosis. There is also lack of information about the best treatments to use in this age group. The aim of the EPIPEG study is to determine the causes of epilepsy within this group of very young children (including new causes) and ultimately to get more information on which treatments work best for the different types of epilepsy in this age group.

To achieve this, Orion worked with UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust to establish a centralised registry to be used by local paediatricians, who record and map management of children from the point of diagnosis. This will encompass information on clinical, neurodevelopmental and behavioural assessments, as well as EEG, MRI and other investigations.

EPIPEG will provide more comprehensive information, and lead to improved understanding and outcomes for children with epilepsy in relation to their overall health and neurodevelopment, thus improving their quality of life and life opportunities.

Please note, the EPIPEG study is no longer recruiting patients into the study.

For more information, visit the EPIPEG website

Inclusion criteria
  • Age 4 weeks – 12 months
  • Newly diagnosed epilepsy, history of ≥2 unprovoked seizures (except febrile seizures ≥15 minutes duration)
  • Seizure onset in first 4 weeks of life but continuing beyond this age
Exclusion criteria
  • Seizures provoked by acute conditions, such as fever (febrile seizures <15 minutes), infections, trauma, electrolyte disturbances, transient metabolic/endocrine disorders and neonates with seizures that do not recur after 28 days of age.
Participating centres
The EPIPEG study covers London and the south east region of the U.K.
Principal Investigator
Professor J. Helen Cross OBE
The Prince of Wales’s Chair of Childhood Epilepsy and Head, Developmental Neurosciences Research & Teaching Department, UCL Great Ormond Street Institute of Child Health