Study of Patients with Electrical Status Epilepticus in Sleep

Launched by EAST SUFFOLK AND NORTH ESSEX NHS FOUNDATION TRUST · Jan 20, 2025

Keywords

ClinConnect Summary

This clinical trial is studying a condition known as Electrical Status Epilepticus in Sleep (ESES), which is a type of severe epilepsy that occurs during sleep. The main goals of the study are to learn how patients with ESES are diagnosed, treated, and managed over the long term, as well as to develop guidelines that can help doctors across the region and country provide better care for these patients. The researchers will also look into how long it takes for patients to get the necessary tests and assessments, which can vary from one case to another.

To be eligible for this study, participants must be children aged 16 years or younger who have been treated for ESES or a similar condition at the East Suffolk and North Essex NHS Foundation Trust in the past 15 years. This means that if your child has had this diagnosis and their health records are available, they could potentially participate. If they join the study, families can expect to contribute valuable information that may help improve understanding and management of this challenging condition for future patients.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Any Paediatric patient (up to 16 years old) who has been managed for electrical status epilepticus in sleep or developmental and/or epileptic encephalopathy with spike-wave activation in sleep, by clinicians at East Suffolk and North Essex NHS Foundation Trust, within the last 15 years.
• • 2. Patients meeting criteria 1) with available electronic health records.
• Exclusion Criteria:
• • 1. Any Paediatric patient (up to 16 years old) with epilepsy managed by clinicians at East Suffolk and North Essex NHS Foundation Trust, where the diagnosis of electrical status epilepticus in sleep or developmental and/or epileptic encephalopathy with spike-wave activation in sleep was not confirmed.
• • 2. Patients without electronic health record availability.
• • 3. Patients over 16 years old.
• • 4. Patients who have opted out of data use as per national opt out policy.