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Research
Day occupation is associated with psychopathology for adolescents and young adults with Down syndromeIn comparison to those young adults attending open employment from 2009 to 2011, those attending day recreation programs were reported to experience...

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Jess KeeleyWithin the Child Disability Team Jess has contributed to research that aims to improve understanding and measurement of the communication of people with CDKL5 Deficiency Disorder (CDD) by conducting and analysing interviews with families.
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Early development and regression in Rett syndromeOur findings provide additional insight into the early clinical profile of Rett syndrome.
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Functioning and post-school transition outcomes for young people with Down syndromeOur analysis shows that functioning in activities of daily living was related to post-school day occupation. Current health status and behaviour were found...
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Does gastrostomy improve the lives of children with severe disability and their families?Approximately 13,000 children in Australia live with moderate to severe intellectual disability.
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To Feel Belonged: The Voices of Children and Youth with Disabilities on the Meaning of WellbeingThe aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective.
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Research
Changes in caesarean delivery rates in Western Australia from 1995 to 2010 by gestational age at birthThe objective of this paper was to measure changes in caesarean delivery rates for primiparous women in Western Australia during 1995–2010 stratified by...
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Relationship between family quality of life and day occupations of young people with Down syndromeThis study aimed to explore relationships between family quality of life, day occupations and activities of daily living of young persons with Down syndrome.
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Evaluating the Extent of Clinical Uncertainty Among Treatment Options for Patients with Early-Onset ScoliosisThe objective of this study was to evaluate areas of clinical uncertainty among pediatric spine surgeons regarding the treatment of early-onset scoliosis.
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Can telehealth increase physical activity in individuals with Rett syndrome? A multicentre randomized controlled trialTo evaluate the effects of a physical activity programme on sedentary behaviour and physical activity in ambulant individuals with Rett syndrome.
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An exploratory study on the role of criminogenic risk factors and informant-rated everyday executive functioning in predicting the age of offending onset in young people with FASDFetal Alcohol Spectrum Disorder (FASD) is characterised by a range of neurodevelopmental deficits that may increase risks of justice system involvement. Improving our understanding of criminogenic risk factors and particularly the role of informant-rated executive functioning (EF) in predicting the age of offending onset in this clinical population may reduce recidivism and help inform targeted interventions.
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Devising a Missing Data Rule for a Quality of Life Questionnaire - A Simulation StudyThe aim of this study was to devise an evidence-based missing data rule for the Quality of Life Inventory-Disability (QI-Disability) questionnaire specifying how many missing items are permissible for domain and total scores to be calculated using simple imputation.
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Towards evidence based care for Rett syndrome: a research model to inform management of rare disordersHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
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Health of mothers of children with intellectual disability or autism spectrum disorder: a review of the literatureThe deficits associated with intellectual disability (ID) and autism spectrum disorder (ASD)place a burden on their co-residing families which may impact...
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Somatosensory discrimination intervention improves body position sense and motor performance in children with hemiplegic cerebral palsyThe intervention group improved in goal performance, proprioception, and bimanual hand use and maintained improvement at 6-mo follow-up.
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Health care utilization and costs for children and adults with duchenne muscular dystrophyThe annual economic cost of DMD was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood