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How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication SyndromeMECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 (MECP2) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizures, recurrent respiratory infections, and gastrointestinal symptoms, and the impact on them as parents.
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News & Events
New study shows alcohol use ‘common’ during pregnancyThe Kids Research Institute Australia's Professor Carol Bower is not surprised by new research that shows alcohol use in pregnancy is 'common'.
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News & Events
Landmark youth mental health survey releasedResearchers at The Kids Research Institute Australia hope data obtained from the 2nd Australian wide survey of child and adolescent mental health will help government
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News & Events
Major grant awarded to tackle antibiotic resistanceVital research aiming to improve the treatment of potentially deadly Group A Streptococcus (Strep A) has been awarded $820,000 in the latest round of National Health and Medicine Research Council’s Ideas Grants.
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News & Events
Funding boost music to the ears of WA childrenA $6 million commitment from Wesfarmers to Telethon will fund vital research to reduce the impact of chronic ear infections and other serious diseases.
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News & Events
WA-first technique fast tracks urgent vaccine policyAnalysing samples is a vital part of research, providing the answers needed to move forward with innovative new treatments and life- saving vaccines.
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News & Events
National guideline to tackle record rates of skin infectionResearchers have developed the first National Healthy Skin Guideline to address record rates of skin infections in Australia’s Indigenous communities.
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News & Events
Co-ordinated approach urgently required to slow progression of antibiotic resistanceAboriginal mum and child
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News & Events
Outstanding mentor named Eureka prize finalistLeading infectious diseases researcher, Clinical Associate Professor Deborah Lehmann AO, has been named a finalist for the Australian Museum Eureka Prizes for her work training and mentoring a new generation of researchers.
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News & Events
Vaccination reminder program to boost immunisation rates across AustraliaFamilies throughout the country will trial a new text message vaccination reminder program designed to safeguard kids against infectious diseases thanks to a generous funding boost from the Ramaciotti Foundation.