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Community of Practice

Our goal is to accelerate the dissemination and implementation of evidence-based models of care for children and young people living with Type 1 Diabetes.

Genocide in the Wildflower State Screening & Panel discussion

A powerful screening of truth telling that captures the stories of the Western Australia Stolen Generation.

Parental origin of mutations

We hypothesised that MECP2 mutations occur predominantly on the male derived X chromosome.

The range of expression of symptoms in girls and women with Rett syndrome

We wanted to describe the range and variability in the expression of symptoms in girls and women with Rett syndrome.

The diagnosis of autism in a female: could it be Rett syndrome?

We compared the symptoms and genetic characteristics of girls with Rett syndrome and both with and without initial diagnosis of autism.

The Natural History of Scoliosis in Females with Rett Syndrome

We described the occurrence of scoliosis in Rett syndrome, how it develops and how it is influenced by the individual's age, mutation type, and walking ability.

Family satisfaction with spinal fusion

Twenty-five families of girls who underwent a spinal fusion between 2006-2012 were interviewed to explore the course of their daughter's recovery.

Predictors of seizure onset in Rett syndrome

Many girls and women with Rett syndrome experience seizures. We wanted to know if there were any factors that influenced the age when seizures first developed.

Research

“You can't heal yourself in that setting and you wouldn't expect other people in this country to”: Yarning about housing and environmental health in remote Aboriginal communities

Remote Aboriginal communities in Australia are located on traditional lands holding deep cultural significance and meaning for residents. However, systemic inequity rooted in colonisation has driven persistent housing and health disparities, with inadequate environmental health conditions within homes and communities a prominent example. 

Research

Characterizing predictors of response to behavioral interventions for children with autism spectrum disorder: A meta-analytic approach

A comprehensive understanding of specific factors contributing to variability in responsiveness of children with autism to interventions is paramount for making evidence-based clinical and policy decisions. This meta-analysis examined child and family characteristics, as well as intervention design factors, associated with outcomes of behavioral interventions for children with autism.