RecruitingNCT06792396

Study of Patients with 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


Sponsor

East Suffolk and North Essex NHS Foundation Trust

Enrollment

20 participants

Start Date

Aug 12, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

Our aims are: 1. To understand the diagnostic practices, treatment and long term management and outcomes for patients diagnosed with ESES locally. 2. To establish a regional and national guideline for the diagnosis and management of patients with ESES. The secondary questions that can be addressed with this case series review include the variability of clinical care given to patients with this condition, and for example, the duration of time it takes to obtain diagnostic tests and assessments by psychologists.


Eligibility

Min Age: 1 YearMax Age: 16 Years

Inclusion Criteria2

  • 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.
  • Patients meeting criteria 1) with available electronic health records.

Exclusion Criteria4

  • 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.
  • Patients without electronic health record availability.
  • Patients over 16 years old.
  • Patients who have opted out of data use as per national opt out policy.

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Locations(1)

East Suffolk and North Essex NHS Foundation Trust

Colchester, United Kingdom

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NCT06792396