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Research

Population-based prevalence of intellectual disability and autism spectrum disorders in Western Australia

The prevalence of intellectual disability has risen in WA over the last 10 years with most of this increase due to mild or moderate intellectual disability

Research

Health care utilization and costs for children and adults with duchenne muscular dystrophy

Annual economic cost of Duchenne Muscular Dystrophy was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood

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A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder

This study aimed to identify the quality of life domains important for individuals with CDKL5 deficiency disorder

Research

Apgar score and risk of autism

This study suggests that low Apgar score is associated with higher risk of autism spectrum disorder, and in particular autistic disorder

Research

An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

Quality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships

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CDKL5 variants: Improving our understanding of a rare neurologic disorder

Providing new insights into the interpretation of genetic variants in a rare neurologi disorder, in the contexts of population sequencing data.

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Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research

Building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research

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Predicting Long-Term Survival Without Major Disability for Infants Born Preterm

Apgar score, birth weight, sex, socioeconomic status, and maternal ethnicity, in addition to gestational age, have pronounced impacts on disability-free survival.

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Identifying how the principles of self-determination could be applied to create effective alcohol policy for First Nations Australians: Synthesising the lessons from the development of general public policy

Harmful alcohol consumption contributes to poorer health for all people. For Indigenous Peoples of Australia, Canada, and New Zealand alcohol impacts their wellbeing significantly, this is partially explained by both their experiences of colonisation and the resulting impact on structural and social determinants of health. Indigenous Peoples have a recognised right to self-determination, which includes their right to contribute to policy decisions that affect them.

Research

Parent-reported health-related quality of life of children with Down syndrome: A descriptive study

To describe health-related quality of life of Australian children and adolescents with Down syndrome and compare it with norm-referenced data.