Understanding Electrical Status Epilepticus in Sleep
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
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 |
|---|---|
| Enrollment | 20 (estimated) |
| Ages | 1 Year to 16 Years |
| Sex | All |
| Sponsor | East Suffolk and North Essex NHS Foundation Trust Academic / other |
| Locations | 1 site (Colchester) |
| Trial ID | NCT06792396 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients over 16 years old or those whose diagnosis of ESES has not been confirmed will not benefit from this study.
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 performed: While this study focuses on a specific condition, similar observational studies have successfully established guidelines for other epilepsy-related conditions.
Eligibility criteria
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 this trial is running
Colchester
- 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 participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.