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International CDKL5 Disorder DatabaseHelen 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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Interventions to eliminate rheumatic heart diseaseFunded by a 5-year NHMRC Investigator grant to implement a strategy to eliminate rheumatic heart disease (RHD) as a public health problem in Australia.
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Koolungar (Children) Moorditj (Strong) Healthy SkinThe Koolungar (children) Moorditj (strong) Healthy Skin project is the first ever co-designed research-service Australian study to describe skin health in urban-living Aboriginal koolungar.
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Beneficial health effects of ultraviolet radiation: expert review and conference reportCarcinogenic effects of ultraviolet radiation (UVR) with reference to skin cancer are the basis of widely implemented recommendations to avoid sun exposure. Whether the benefits of "restrictive sun policies" outweigh their potential harms due to diminished beneficial effects of sunlight exposure remain a matter of controversy.
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Caregivers' Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online SurveyCyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) is an ultrarare genetic condition causing developmental epileptic encephalopathy characterized by seizures and motor and intellectual disabilities. No disease-modifying therapies are available, and treatments focus mainly on symptom management to improve quality of life.
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Management and outcomes of children hospitalised with COVID-19 including incidental and nosocomial infections in Australia 2020–2023: A national surveillance studyManagement and outcomes of children hospitalised with acute SARS-CoV-2 infection may differ throughout the pandemic or with admission type (clinical COVID-19, incidental COVID-19 or nosocomial infection).
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Targeting intolerance of uncertainty in young children diagnosed with autism: A randomized controlled trial of a parent-mediated group interventionYoung children diagnosed with autism experience high rates of co-occurring anxiety, with uncertainty-related concerns commonly reported. This randomized controlled trial investigated an 8-week parent-mediated group anxiety intervention, “Coping with Uncertainty in Everyday Situations” (CUES-Junior©).
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Study of tranexamic acid on post-tonsillectomy haemorrhage (STOP) pilot trialMatt Cooper BCA Marketing, BSc Statistics and Applied Statistics, PhD Manager, Biostatistics 08 6319 1723 matt.cooper@thekids.org.au Manager,
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Routine Emollient Therapy with Coconut Oil in Preterm Infants and Allergic Sensitization at 1-Year Corrected AgeSkin care for very and extremely preterm infant is an important and previously underappreciated topic. Coconut oil skin care for preterm infants is a promising option, but several important questions remain including the theoretical potential for allergic sensitization.
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“Our kids are our future”: Barriers and facilitators to vaccine uptake and timeliness among Aboriginal children younger than five years in Boorloo (Perth), Western AustraliaRates of several vaccine preventable diseases, and associated hospitalisation, are higher among Aboriginal and/or Torres Strait Islander children than non-Indigenous children. Western Australia has among the lowest childhood vaccine coverage in Australia, particularly among Aboriginal and/or Torres Strait Islander children. Delayed vaccination is also more common in this population. This project aimed to understand the barriers and facilitators to vaccine uptake and timeliness among Aboriginal and/or Torres Strait Islander children aged under five years in Boorloo (Perth).