Understanding Electrical Status Epilepticus in Sleep
Official 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
Run by East Suffolk and North Essex NHS Foundation Trust · NCT06792396 · Data updated 2026-11-12
This study looks at how doctors diagnose and treat patients with Electrical Status Epilepticus in Sleep to help create better guidelines for care.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 1 Year to 16 Years |
| Sex | All |
| Enrollment | 20 (estimated) |
| Sponsor | East Suffolk and North Essex NHS Foundation Trust Academic / other |
| Locations | 1 site (Colchester) |
| Status | Recruiting |
| Started | August 12, 2024 |
| Main results expected | March 2025 |
| Study ends | March 2025 |
| Registry record updated | January 24, 2025 |
| Trial ID | NCT06792396 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include pediatric patients up to 16 years old who have been managed for ESES or related conditions at the participating institution within the last 15 years.
✕Probably not a fit
Patients over 16 years old or those whose diagnosis of ESES has not been confirmed will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to gather data on the diagnostic practices, treatment, and long-term management of patients diagnosed with Electrical Status Epilepticus in Sleep (ESES) at East Suffolk and North Essex NHS Foundation Trust. By reviewing cases since 2010, the study seeks to establish regional and national guidelines for the diagnosis and management of ESES. It will also explore variability in clinical care and the time taken for diagnostic assessments. Patient data will be collected in a secure and anonymized manner to ensure confidentiality.
Why it matters
Potential benefit: If successful, this study could lead to improved diagnostic and management guidelines for patients with ESES, enhancing their long-term outcomes.
How similar studies have gone: While this study focuses on a specific condition, similar observational studies have successfully established guidelines for other epilepsy-related conditions.
Who can join: the full rules
Show full inclusion / exclusion 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.
Where it's running
-
East Suffolk and North Essex NHS Foundation Trust
Colchester, United Kingdom Recruiting
Study contacts
- Study coordinator: Thiloka Ratnaike
- Email: R&D@esneft.nhs.uk
- Phone: 01473 704343
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.