What is the Cerebra Sleep Project looking at?
The study is looking at how sleep difficulties and daytime behaviours interact in children with rare genetic syndromes.
What taking part involves
Parents/caregivers will first complete an online survey (30 minutes) and a telephone interview (90 minutes). Children will then wear a watch that monitors their sleep over a 10-day sleep assessment. During the sleep assessment, children will also play some games with us over Zoom.
All of this can be done from home!
Who can take part
Children aged 4-15.5 years with one of the following rare genetic syndromes:
- Cornelia de Lange syndrome
- Smith-Magenis syndrome
- Tuberous sclerosis complex
- Fragile X syndrome
Children can take part regardless of whether they have poor sleep, are taking sleep medication, or are enrolled in clinical trials.
What do I get for taking part?
Each family who takes part will receive an individualised feedback report that summarises their child’s sleep, daytime behaviour, and day-to-day functioning.
How to take part
To learn more about the study, and to take part, click on the following link: https://redcap.link/zlxnmii9