What this Trial Is About

Researchers are studying children diagnosed with Electrical Status Epilepticus in Sleep (ESES), also called Developmental and/or Epileptic Encephalopathy with Spike-Wave Activation in Sleep. The goal is to understand how patients are diagnosed, treated, and managed over the long term, and to create regional and national guidelines for care. The study also looks at how clinical care varies, including how long it takes to get diagnostic tests and psychological assessments. Specialist pediatric consultants at East Suffolk and North Essex NHS Foundation Trust will identify patients diagnosed with ESES since 2010. Patient information will be pseudonymized to protect privacy, with separate password-protected records linking hospital IDs to study numbers. Researchers will collect data from electronic patient records, including age and symptoms at onset, developmental history, diagnostic tests like sleep EEG and genetic tests, timing of neuropsychological evaluations, underlying causes, follow-up status, and any ongoing physical or neuropsychological issues. Participants are involved through their medical records only, with no personal data leaving the hospital. The anonymized data will be analyzed by the research team, who will also consult patient and family groups before sharing the findings. The study focuses on creating evidence-based guidelines based on data collected over the past 10-15 years from children up to 16 years old.

Study of Patients with Electrical Status Epilepticus in Sleep