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We developed recommendations to assess and manage issues relating to poor growth and weight gain in Rett syndrome, including consideration of gastrostomy.
We investigated our data from family questionnaires to see how feeding difficulties related to age, the type of MECP2 mutation, and the use of gastrostomy.
We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.
We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.
When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.
AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians
News & Events
Visit to Shenzhen, ChinaHelen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.
Research
Big data in global health: Improving health in low- and middle-income countriesOver the last decade, a massive increase in data collection and analysis has occurred in many fields.
Research
Protecting and Promoting Young People’s Social and Emotional Health in Online and Offline ContextsYoung people's use of mobile phones and access to the Internet have increased dramatically in the last decade, especially among those aged 9-15 years.
Research
Prevalence of rheumatic heart disease in young adults from New CaledoniaThe prevalence of echocardiographically diagnosed RHD in adults in New Caledonia is estimated at 5.9 per 1000