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Development of an International Database for a Rare Genetic Disorder: The MECP2 Duplication Database (MDBase)The natural history of MECP2 duplication syndrome (MDS), a rare X-linked neurodevelopmental disorder with an estimated birth prevalence of 1/150,000 live births, is poorly understood due to a lack of clinical data collected for research. Such information is critical to the understanding of disease progression, therapeutic endpoints and outcome measures for clinical trials, as well as the development of therapies and orphan products.
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Feasibility of unsedated lung MRI in young children with cystic fibrosisKathryn Ramsey BSc (Hons), PhD Co-Head, Foundations of Lung Disease kathryn.ramsey@thekids.org.au Co-Head, Foundations of Lung Disease Associate
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Considerations for Causal Inference StudiesRachel Foong BSc (hons), PhD, MBiostat Honorary Research Associate 08 6319 1626 Rachel.Foong@thekids.org.au Senior Research Fellow Dr Foong is an
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The EU Child Cohort Network’s core data: establishing a set of findable, accessible, interoperable and re-usable (FAIR) variablesThe Horizon2020 LifeCycle Project is a cross-cohort collaboration which brings together data from multiple birth cohorts from across Europe and Australia to facilitate studies on the influence of early-life exposures on later health outcomes. A major product of this collaboration has been the establishment of a FAIR (findable, accessible, interoperable and reusable) data resource known as the EU Child Cohort Network. Here we focus on the EU Child Cohort Network's core variables.
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Quality of life is poorly correlated to lung disease severity in school-aged children with cystic fibrosisThere is no data exclusively on the relationship between health-related quality-of-life (HRQOL) and lung disease severity in early school-aged children with cystic fibrosis (CF). Using data from the Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) we assessed the relationships between HRQOL, lung function and structure.
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Methods used to evaluate the immediate effects of airway clearance techniques in adults with cystic fibrosis: A systematic review and meta-analysisThis review reports on methods used to evaluate airway clearance techniques (ACT) in adults with CF and examined data for evidence of any effect. Sixty-eight studies described ACT in adequate detail and were included in this review.
News & Events
The Kids Research Institute Australia welcomes tough new measures to save kids from vapingThe Kids Research Institute Australia strongly supports the Federal Government’s announcement today to introduce a suite of reforms aimed at banning non-prescription vaping products in Australia.
News & Events
Toxic, harmful chemicals found in popular Australian e-liquidsPerth researchers have found toxic and harmful chemicals in several dozen e-cigarette liquids readily available in Australia.
News & Events
Lung problems continue into childhood for premmie babiesNew research from Perth’s The Kids Research Institute Australia shows that babies born premature continue to have lung problems well into childhood.
News & Events
National Asthma Week: 10 things you need to know about asthmaAsthma affects about half a million Australian children and is one of the most common reasons why kids need to see a doctor or go to emergency.