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The aim of this research is to study sleep and sleep-wake cycle in SYNGAP1-related Intellectual Disability. The study will be based in participants’ own homes to make it as easy as possible for them to join in.
SYNGAP1-related Intellectual Disability (ID) is a genetic condition linked with ID, autism, epilepsy and sleep problems, amongst other health conditions.
Sleep is important when growing up, but people with ID are more likely to have sleep problems than other people. Sleep problems can cause difficulties in thinking skills, memory, behaviour, emotional functioning, and quality of life. These side effects can be even more problematic for people with ID, who already have social and behavioural difficulties. Understanding their sleep patterns is important to try and develop effective therapies for them.
Why are we doing this study?
We know that sleep problems are common in people with SYNGAP1-related ID, but we don’t know exactly what the patterns are. Previous research showed sleep-related seizures in some people with this condition. Our colleagues also found changes in the sleep patterns of rat models of SYNGAP1-related ID. We are trying to find out if these changes also exist in people. With this study we will:
1. Better understand the difficulties children and young people with SYNGAP1-related ID face
2. Better understand how sleep problems affect their quality of life
3. Improve the chance of developing new therapies to help people with SYNGAP1-related ID
4. Make it easier to do clinical trials to test any new therapies
What does the study involve?
Questionnaires about participants’ physical and mental health, behaviour, quality of life and sleep.
Recording a 7 night sleep diary
1 week of sleep-wake rhythm recording (called “actigraphy”) using a small device that looks like a watch. The device will record levels of activity, when people wake up or fall asleep etc.
2 nights of sleep recordings in participants’ own homes with kit like this:
What is happening at the moment?
We are recruiting and testing people who have SYNGAP1 related ID, and people who do not have a developmental disorder, as a comparison group.
Who can take part?
We are looking for people who have SYNGAP1 related ID, aged 15 years old or younger, and children and young people who do not have SYNGAP1-related ID, but know someone who does. They would be part of a comparison group. Everyone taking part must live in the UK. Please contact Dr Lindsay Mizen at email@example.com if you have questions or are interested in taking part.
What are the benefits of taking part?
· We will find out more about each participants’ sleep patterns and sleep-wake (circadian) rhythm .
· We will find out any sleep-related seizures, or sleep problems participants might have, so they can discuss them with their GP.
What will the results tell us?
· We will find out if the sleep-related seizures and changes in sleep patterns found in rat models of SYNGAP1-related ID also exist in people.
· Participants will also help to find patterns of sleep and sleep-wake rhythm that might be specific to SYNGAP1-related ID. These patterns could be used as a tool to measure how useful future clinical trials or therapies are.
Is it possible to take part in the project?
Where can I find more information?
Please contact Dr Lindsay Mizen at firstname.lastname@example.org if you have questions, or watch the videos on this page. For more general information about research participation, visit this page: https://patrickwildcentre.com/understanding-research/.
Who is running and funding the project?
It is funded by The Simons Initiative for the Developing Brain and the Patrick Wild Centre both at the University of Edinburgh.