PWSA (USA) Approves Grant

We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies. They will also and include a standardized recommendation for when sleep studies should be required.
Project title: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome
Principle investigator: Dr Catherine Choong, MBBS, MD, FRACP — School of Pediatrics and Child Health, University of Western Australia

Children with Prader-Willi Syndrome often have a disturbed breathing pattern in sleep, which can lead to symptoms of tiredness and behavioral issues during the day. Growth hormone is a very useful medicine for children with Prader-Willi Syndrome, but it may worsen obstructive breathing during sleep. In very rare cases this may be dangerous, as it could lead to suffocation in sleep. Therefore doctors generally perform a sleep study before and 6 months after start of treatment with Growth Hormone. However, previous smaller studies have suggested that Growth Hormone may be safe and in fact even improve symptoms of disturbed breathing in sleep. In this study we want to use the data collected in a large group of Prader-Willi Syndrome patients in Australia to analyze the effects of Growth Hormone on breathing in sleep. The results of this study can help us to understand better what the causes of specific breathing abnormalities in sleep are in children with Prader-Willi Syndrome. Secondly, if Growth Hormone is associated with improved breathing in sleep, this can have a direct impact on the age at which Growth Hormone treatment should be started in infants and young children. Also, it will have implications on the usefulness of routine follow-up with repeated time-consuming and labor-some sleep studies. Importantly, the framework established by undertaking this study with scientific excellence in endocrinology, respiration & sleep, and consumer reference group input, will enable future more detailed analysis of sleep quality and behavior in this special group of children.

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