Study of Patients with Electrical Status Epilepticus in Sleep

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age1-16
SponsorEast Suffolk and North Essex NHS Foundation Trust

About this trial

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 criteria

This trial does not accept healthy volunteers

Qualifiers

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.

Disqualifiers

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.

Trial population

Within the East Suffolk and North Essex region

Trial design

Design model

Cohort

Time perspective

Retrospective

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

Creation of an evidence-based guideline

The primary outcome measure for the study is the creation of an evidence-based guideline using clinical experience of managing patients with electrical status epilepticus in sleep.

Time frame
Over the past 10-15 years

Secondary outcomes

1

Diagnosis criteria

Diagnostic criteria used when patients were given a diagnosis of electrical status epilepticus in sleep (ESES)

Time frame
Over the last 10-15 years
2

Treatments used

Treatments used prior to and after diagnosis of ESES

Time frame
Over the last 10-15 years
3

Treatment response monitoring

How treatment response was monitored

Time frame
Over the last 10-15 years
4

Duration of time

Duration of time taken to assess a patient using electroencephalography and neuropsychological tests

Time frame
Over the last 10-15 years

Other outcomes

Sponsors and contacts

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