RecruitingOBSERVATIONAL

Study of Patients with Electrical Status Epilepticus in Sleep

This study focuses on children at East Suffolk and North Essex NHS Foundation Trust (ESNEFT) who have a specific type of epilepsy called Electrical Status Epilepticus in Sleep (ESES). ESES is a condition where brain activity during sleep can disrupt development. The main goal is to understand how these children are currently diagnosed, treated, and cared for in the long term. By looking back at existing patient records, researchers aim to see what works well and where improvements can be made. This information will then be used to create clearer, more consistent guidelines for doctors across the region and country, ensuring that children with ESES receive the best possible care.

At a glance

Status

Recruiting

Sponsor

East Suffolk and North Essex NHS Foundation Trust

Enrolment target

Start

12 Aug 2024

Estimated completion

01 Mar 2025

Electrical Status Epilepticus in Sleep

What is this study about?

Imagine your brain during sleep is usually quiet and organised. For children with a condition called Electrical Status Epilepticus in Sleep (ESES), it's a bit like there's a lot of noisy, disorganised electrical activity happening while they sleep. This activity can affect their development and how they learn and grow.

Doctors at your local NHS hospital, ESNEFT, are looking back at the medical records of children who have been diagnosed with ESES since 2010. They want to understand how these children were diagnosed, what treatments they received, and how they've been looked after over time. This includes checking how long it took to get important tests like brain wave recordings (EEGs) or see a child psychologist.

The main reasons for doing this study are to get a clearer picture of how ESES is managed right now and to find out if there are differences in the care children receive. Ultimately, this information will be used to help doctors create better, more consistent guidelines for diagnosing and treating ESES, not just at ESNEFT, but potentially across the country. The aim is to ensure that all children with ESES get the best and most effective care.

Key takeaways

This study reviews past medical records of children with ESES at ESNEFT.
It aims to understand how ESES is currently diagnosed and treated.
The goal is to create better guidelines for future ESES care.
No new tests or appointments are needed for children involved.
Patient privacy and confidentiality are strictly protected.

Who may be eligible?

This study is looking at information from children who have already been treated for ESES at East Suffolk and North Essex NHS Foundation Trust (ESNEFT) since 2010. To be included, the child must be 16 years old or younger and have a confirmed diagnosis of ESES, or a similar condition with unusual brain activity during sleep, that was managed by ESNEFT doctors.

Also, there needs to be an electronic health record available for the child at the hospital. This means the doctors can access their medical history to gather the necessary information for the study.

However, children are not included if their diagnosis of ESES wasn't confirmed, or if they are older than 16. Also, anyone who has previously opted out of their health data being used for research won't be included.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Is my child 16 years old or younger?
Has my child been treated for ESES (or similar) at ESNEFT since 2010?
Do they have an electronic health record at ESNEFT?
Have I not opted out of my child's data being used for research?

Answer every question to see your result.

What does participation involve?

If your child's medical records are part of this study, you don't need to do anything. Your child will not have any extra hospital visits, tests, or receive any new medications. This study simply looks back at existing information from their medical history that is already on file at ESNEFT. Your child's personal details will be kept private and will not leave the hospital. This is a review of past information, so there is no direct follow-up or specific duration for your child's involvement.

Potential risks and benefits

There are no direct risks to patients or their families from taking part in this study, as it only involves reviewing existing, anonymised medical records. No patient-identifiable data will leave the hospital, ensuring confidentiality. The biggest benefit is that the information gathered will help doctors understand ESES better and develop improved guidelines, potentially leading to better care for other children with this condition in the future. As this is a review of historical data, there is no option to withdraw specific previously collected data. However, if you have previously opted out of data use for research, your child's records will not be included.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

East Suffolk and North Essex NHS Foundation Trust
Verified postcode
Colchester, United Kingdom· Recruiting

Common questions

What is ESES?

ESES stands for Electrical Status Epilepticus in Sleep. It's a type of epilepsy where there's a lot of unusual electrical activity in the brain during sleep, which can affect a child's development.

Will my child have to do anything?

No, your child won't need to do anything or attend any extra appointments. This study only looks at existing medical records.

Will my child's name be used?

No, all patient information from health records will be made anonymous so that no personal details can be identified outside the hospital. Your child's privacy is very important.

Who is doing this study?

This study is being carried out by doctors specialising in epilepsy and neurodisability at East Suffolk and North Essex NHS Foundation Trust (ESNEFT).

How will this study help children?

By understanding current care, the study aims to create better guidelines for diagnosing and treating ESES, which could improve the care for many children in the future.

How to find out more

Thiloka Ratnaike

R&D@esneft.nhs.uk 01473 704343 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.