Currently there are no accurate predictors of the need for a sleep study in children with DMD. Symptoms of breathing problems in DMD are slow to develop, and often are not noticed by the individual. Once symptoms of waking with a headache or being sleep during the day are reported, a sleep study often finds that sleep-disordered breathing is already present.
The Departments of Neurology and Respiratory Medicine at the Royal Children’s Hospital are conducting a world- first study to hopefully find a test, which can be done during the day, to tell us when an individual with DMD is likely to start having breathing problems while they sleep. This will help us detect and treat sleep-related breathing problems as soon as they develop.
A sleep study is the only accurate way of telling us if someone is not getting enough good quality sleep. There are a number of reasons why a person may not get good quality sleep, some of which are due to their lifestyle (caffeine, not enough sleep etc) but other reasons include narrowing or blocking of the airway in sleep, which can occur as a result of muscle weakness or factors like enlarged tonsils and adenoids. This can cause frequent waking and unrefreshing sleep even when boys are not aware of their airway problems
To do this study we would like to monitor changes in lung function during the day in DMD, and undertake an annual sleep study on boys aged 10-16 with DMD at the RCH. Interested parents are invited to contact us to discuss their son’s potential involvement in the study. As part of this study, you will have access to some breathing tests that are not routinely offered. We will analyse all the data we collect and investigate which test tells us when a sleep study is required, and which are the best tests to use in clinic.
Are you interested in being part of this leading research and helping us be the first to find a test that tells when we should start doing regular sleep studies on boys with DMD?
For more information please contact the study coordinator:
Mary Roberts via email firstname.lastname@example.org,
A/Prof Monique Ryan Monique.email@example.com or 9345 5661.