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Research
Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndromeTo evaluate the psychometric properties of the Quality of Life Inventory -Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.
Research
Effects of ganaxolone on non-seizure outcomes in CDKL5 Deficiency Disorder: Double-blind placebo-controlled randomized trialCDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Ganaxolone, a neuroactive steroid, reduces the frequency of major motor seizures in children with CDD. This analysis explored the effect of ganaxolone on non-seizure outcomes.
News & Events
Study unlocks new knowledge about the role of immune cells in asthma flare-upsFlare-ups of asthma are usually brought on by respiratory infections, such as the common cold, and are one of the most common reasons for a child to miss school or require emergency care.
News & Events
Risk of deadly diarrhoeal diseases set to worsen as climate changesResearchers from The Kids Research Institute Australia have contributed to a landmark study revealing climate change will have a detrimental impact on one of the greatest threats to the health of children in the Global south – diarrhoea.
News & Events
Australian parents oblivious to true danger of the fluNew research investigating the devastating impact of the 2017 flu season by PAEDS-FluCAN, a national collaboration observing influenza in children, confirmed it was time to take action after thousands of children were hospitalised with the virus last year.
Research
Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophyThis study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives
News & Events
New clues into language developmentA world-first study from The Kids for Child Health Research has identified risk factors for receptive language development in Australian children.
News & Events
Life skills for every childColab’s new Bright Tomorrows parent app is helping families across Australia give their young children the best developmental start in life.
News & Events
Global push to eliminate confusion on lung function testsA global research network has taken another step towards standardising the way doctors interpret commonly used lung function tests.
Research
How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: “There's a Lot More to My Child Than That She Can't Wash or Dress Herself.”The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers.