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IDEA (Intellectual Disability Exploring Answers) Database
Research
Improving Wellbeing for Young People Living with Rheumatic Heart Disease: A peer support program through Danila Dilba Health ServiceThis project seeks to conduct a focus group for young people (aged 11-14) and their parents/family members through the Danila Dilba Health Service (DDHS) in Darwin with the aim of identifying consumer needs and perspectives on next steps and priorities for peer support in RHD.
Research
Innovative Playful Learning Approaches to Improve Children’s Readiness for Primary Education in UzbekistanThe Government of Uzbekistan has committed to reforming preschool education, prioritising upskilling teachers to use international best practice.
Research
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
Research
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.
Research
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.
Research
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.
Research
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.
Research
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,
Research
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.