Study of Patients with ESES (SPESES) (v1)
Research type
Research Study
Full title
Study to understand the diagnostic measures, management options and long term outcomes in a local cohort of patients with Electrical Status Epilepticus in Sleep, also known as a Developmental and/or Epileptic Encephalopathy with Spike-Wave Activation in Sleep
IRAS ID
337553
Contact name
Thiloka E Ratnaike
Contact email
Sponsor organisation
East Suffolk and North Essex NHS Foundation Trust
Duration of Study in the UK
0 years, 2 months, 31 days
Research summary
We aim to document the characteristics of a local cohort of Paediatric patients with a rare epileptic syndrome known as Electrical Status Epilepticus in slow wave Sleep (ESES) or Developmental/Epileptic Encephalopathy with Spike Wave Activation In Sleep (DEE-SWAS). ESES is a rare condition of childhood characterised by a range of cognitive, behaviour and developmental changes with characteristic changes in the electrical activity of the brain, measured by electroencephalography, in sleep. In the absence of standardised diagnostic and treatment criteria, diagnosis and management of patients with ESES is challenging. Our study aims to collate the retrospective data on patients managed in the East Suffolk and North Essex NHS Foundation Trust Paediatric departments to date, to understand the natural progression of the condition. We will be undertaking a systematic literature review to formulate a best practice clinical guideline that can be shared with regional departments managing patients with this condition.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
24/WM/0127
Date of REC Opinion
5 Jul 2024
REC opinion
Favourable Opinion