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Research
Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability ResearchBuilding 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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Hospital admissions in children with developmental disabilities from ethnic minority backgroundsChildren with CP and intellectual disability, particularly from minority backgrounds, were at higher risk of being admitted to hospital after the first year of life
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Navigating complexity to support justice-involved youth with FASD and other neurodevelopmental disabilities: needs and challenges of a regional workforceYoung people with Fetal Alcohol Spectrum Disorder (FASD) can face significant challenges in their lives, including overrepresentation in the justice system from a young age. Police questioning and court proceedings can be difficult for these young people to navigate. Practice and policy responses are necessary to identify these individuals, provide appropriate support/rehabilitation, and upskill the justice workforce. The aim of this research was to determine the unmet workforce development needs of a regional workforce providing care and support to youth involved with the justice system.
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Predicting Long-Term Survival Without Major Disability for Infants Born PretermApgar 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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Population-based prevalence of intellectual disability and autism spectrum disorders in Western AustraliaThe 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
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Early mortality and primary causes of death in mothers of children with intellectual disability or Autism spectrum disorderMothers of children with intellectual disability or autism spectrum disorder (ASD) have poorer health than other mothers.
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Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndromeThere were differences in the presentation of clinical features occurring in the CDKL5 disorder and in Rett syndrome.
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Assessment and management of nutrition and growth in rett syndromeWe developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an...
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Using a large international sample to investigate epilepsy in Rett syndromeThe aim of this study was to identify characteristics of epilepsy in Rett syndrome (RTT), and relationships between epilepsy and genotype.
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“I have a good life”: the meaning of well-being from the perspective of young adults with Down syndromeThe purposes of this study were to explore what makes for a "good life" from the perspective of young adults with Down syndrome and to identify the barriers...