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Research
Interobserver Agreement When Diagnosing Hypoventilation in Children With Neuromuscular DisordersNeuromuscular disorders can lead to nocturnal hypoventilation. Accurate diagnosis of hypoventilation is imperative to guide treatment decisions. This study determined interobserver agreement for a number of definitions of nocturnal hypoventilation in children and adolescents with neuromuscular disorders.
News & Events
World Down Syndrome Day: Building brighter futures through research, inclusion, and advocacyToday, on World Down Syndrome Day, we celebrate the lives, achievements, and invaluable contributions of people with Down syndrome.
News & Events
Rapidly assembled advisory group to offer community take on COVID-19 researchThe speed with which research projects on the coronavirus have been put together has consumer advocates concerned that a vital voice will be missing – that of the community.
News & Events
Dolly’s Dream and The Kids Research Institute Australia launch new partnership with free cyber safety app, BeaconAnti-bullying organisation Dolly’s Dream has partnered with The Kids Research Institute Australia to get Beacon, the free cyber safety app, into the hands of parents and carers across the nation.
News & Events
Silver lining to early arrivalsCIRCA DIEM is using an inexpensive set of eye masks and ear plugs to teach babies born too soon how to tell the difference between night and day – a simple skill which could have lifelong implications for their health and development.
A dramatic rise in food allergies over the past 20 years had Australian medical professionals scratching their heads, with three in every ten babies born each year developing food-related allergy or eczema.
Research
Estimated Therapy Costs and Downstream Cost Consequences of iBASIS-Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in AustraliaThe growing global prevalence of autism spectrum disorder is associated with increasing costs for support services. Ascertaining the effects of a successful preemptive intervention for infants showing early behavioral signs of autism on human services budgets is highly policy relevant.
Research
Long-term outcomes of symptomatic optic pathway glioma: 32-year experience at a single Western Australian tertiary pediatric oncology centerOptic pathway gliomas (OPGs) are associated with significant risk of visual and endocrine morbidity, but data on long-term outcomes in symptomatic patients is sparse. This study reviews the clinical course, disease progression, survival outcomes and long-term sequelae in pediatric patients with symptomatic OPGs in our institution over three decades.
Research
Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trialsCDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD).
Research
The course and prognostic capability of motor difficulties in infants showing early signs of autismDelays within the motor domain are often overlooked as an early surveillance marker for autism. The present study evaluated motor difficulties and its potential as an early predictive marker for later autism likelihood in a cohort of infants showing early behavioral signs of autism aged 9-14 months. The motor domain was evaluated using the motor subscales of the Mullen Scales of Early Learning at baseline, and at a 6-month follow-up.