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Research

Predictors of scoliosis in Rett syndrome

Scoliosis is a common clinical manifestation of Rett syndrome, a neurodevelopmental disorder that almost exclusively affects girls.

Research

Characterising quality of life and its determinants for children with intellectual disability and their families

Andrew Helen Jenny Nada Peter Videos Whitehouse Watch and listen to Andrew Leonard Downs Murphy Jacoby PhD MBChB MPH BApplSci (physio) MSc PhD MAPP

Research

IDEA (Intellectual Disability Exploring Answers) Database

The IDEA database has information on all children born in Western Australia since 1983 who have been identified with an intellectual disability. IDEA is one of the only population-based resources in the world dedicated to intellectual disability. Information is accessed from the Department of Communities WA, the WA Department of Education, and the National Disability Insurance Agency (NDIA) to create the database. From IDEA, it has been found that one in 50 children in Australia are diagnosed with intellectual disability. IDEA can be linked by Data Services WA with other datasets, to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability.

Research

Early determinants of fractures in Rett syndrome

The goals were to compare the fracture incidence in Rett syndrome with that in the general population and to investigate the impact of genotype, epilepsy,...

Research

Family functioning in families with a child with Down syndrome: A mixed methods approach

This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design.

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Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome

This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic...

Research

Survival with Rett syndrome: comparing Rett's original sample with data from the Australian Rett syndrome Database

Rett syndrome is a severe neurodevelopmental disorder that typically affects females. Little is known about the natural history and survival time of these femal