RecruitingOBSERVATIONAL

Epidemiology of Sleep Disordered Breathing in Children and Young People With Cerebral Palsy

This study is gathering information about sleep breathing problems in children and young people (aged 1 month to 16 years) with cerebral palsy (CP) across the UK. Children with CP often have more sleep difficulties, which can affect their learning, heart health, and even impact their families. While special breathing masks can help, we don't fully understand when and how best to use them. This research will find out how many children with CP are currently using this breathing support, how many are newly diagnosed with sleep breathing problems, and what factors make it easier or harder for them to get this important treatment. The goal is to improve care and ensure these children get the best possible sleep and learning opportunities.

At a glance

Status

Recruiting

Sponsor

University of Edinburgh

Enrolment target

Start

01 Mar 2025

Estimated completion

01 Aug 2026

Cerebral Palsy (CP)Sleep Disordered Breathing (SDB)Respiratory Support

What is this study about?

This study is about understanding sleep-related breathing problems in children and young people who have cerebral palsy (CP). Cerebral palsy affects movement because of early brain damage. Many children with CP also have trouble breathing properly while they sleep. This can show up as noisy breathing, feeling very sleepy during the day, and having low energy. Over time, poor sleep can affect how well the brain works and learns, and it can even put a strain on the heart. It can also make life harder for their families by disturbing their sleep and well-being.

Because sleep breathing problems in children with CP are often missed or not treated, this study wants to get a clearer picture of the situation across the UK. Some children might need special equipment, like a mask that gently pushes air into their airways to keep them open while they sleep. This is called 'respiratory support.' While we know these masks help with breathing, we don't fully understand their wider effect on a child's quality of life, how often they need to go to hospital, or if they get fewer chest infections.

The study will collect information in two main ways. Firstly, it will see how many children with CP are currently using breathing support across the UK. Secondly, it will track new diagnoses of sleep breathing problems and new starts of breathing support over a year. The researchers also want to find out if certain things like family income or where people live affect whether children can get access to these services. They also want to learn what helps and what makes it difficult for children with CP to start using breathing support successfully. This information will help doctors and healthcare teams improve care for children with CP so they can get the best possible sleep and reach their full potential.

Key takeaways

The study focuses on sleep breathing problems in children with cerebral palsy.
It aims to understand how many children use breathing support and why.
No active participation is required from children or families.
The goal is to improve future care and quality of life for these children.
Information is collected from medical records by healthcare professionals.

Who may be eligible?

This study is for children and young people aged between 1 month and 16 years who have been diagnosed with cerebral palsy.

For the first part of the study, we are looking at children who are currently using special breathing support, like a mask, to help them sleep. For the second part, we are interested in children who have recently had a sleep study because of suspected breathing problems, or who have recently started using breathing support for their sleep.

Children older than 16 years or those who do not have a confirmed diagnosis of cerebral palsy cannot be included in this study.

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 your child between 1 month and 16 years old?
Does your child have a confirmed diagnosis of cerebral palsy?
Is your child currently using breathing support for sleep?
Has your child recently had a sleep study for breathing problems?
Has your child recently started using breathing support for sleep?

Answer every question to see your result.

What does participation involve?

If your child's specialist centre is taking part in this study, you won't need to do anything extra. This study involves medical professionals at UK children's hospitals that specialise in sleep problems collecting information they already have about children with cerebral palsy. This includes details about how many children are currently using breathing support for sleep, and how many new children are diagnosed with sleep breathing problems or start using breathing support over a year. There are no extra visits, assessments, medications, or specific follow-up appointments for you or your child related to this study. The study lasts for one year, but your child's individual care will continue as normal.

Potential risks and benefits

This study does not involve any changes to your child's medical care, so there are no direct benefits or risks for your child from taking part. However, by providing information, the study aims to improve understanding of sleep breathing problems in children with cerebral palsy which could lead to better care for children like yours in the future. All information will be collected by healthcare professionals and kept private. You always have the right to ask questions about the study and your child's care.

Locations (1)

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

NHS Lothian
Verified postcode
Edinburgh, United Kingdom· Recruiting

Common questions

What is cerebral palsy (CP)?

Cerebral palsy is a condition that affects movement and muscle control due to brain damage that happened around the time of birth.

What are sleep breathing problems?

These are difficulties like noisy breathing during sleep, snoring, or briefly stopping breathing, which can make you tired during the day.

What is 'respiratory support'?

This is a type of help, often using a mask, that delivers air pressure to keep airways open and make breathing easier during sleep.

Will my child have to do anything for this study?

No, your child won't need to do anything extra. The study collects information from your child's medical team, not directly from your child.

How will this study help children?

By understanding more about sleep breathing problems in children with CP, the study aims to improve how they are diagnosed and treated in the future.

How to find out more

Research Fellow

rajkumar.dhandayuthapani@nhs.scot + 44 01313121124 Official trial record

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