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Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver surveyRett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness in RTT was organized.
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Challenges and considerations for antifungal prophylaxis in children with acute myeloid leukemiaChildren receiving treatment for acute myeloid leukemia (AML) are at high risk of invasive fungal disease (IFD). Evidence from pediatric studies support the efficacy of antifungal prophylaxis in reducing the burden of IFD in children receiving therapy for AML, yet existing antifungal agents have specific limitations and comparative data to inform the optimal prophylactic approach are lacking.
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Per Os to Protection – Targeting the Oral Route to Enhance Immune-mediated Protection from Disease of the Human NewbornValerie Verhasselt MD, PhD Head, Immunology and Breastfeeding 0402997617 Valerie.verhasselt@telethonkids.org.au Head, Immunology and Breastfeeding
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Erratum: Attitudes, perceptions, and experiences of Western Australians towards vaccine safety surveillance systems following COVID-19 vaccines: A qualitative descriptive study (Australian and New Zealand Journal of Public Health (2024) 48(1), (S132602002Concerns regarding adverse events following immunisation are a barrier to vaccine uptake. Health professionals use vaccine safety surveillance systems (VSSS) to monitor vaccines and inform the public of safety data. With little known about public attitudes, perceptions, and experiences with VSSS, we examined them in the context of COVID-19 vaccinations in Western Australia.
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“I Don’t Get to Play With My Mum Anymore”: Experiences of Siblings Aged 8–12 of Children With Cancer: A Qualitative StudySiblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages.
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Population-level 5-year event-free survival for children with cancer in AustraliaEvent-free survival considers other adverse events in addition to mortality. It therefore provides a more complete understanding of the effectiveness and consequences of treatment than standard survival measures, but is rarely reported at the population level for childhood cancer.
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Widespread dyspigmentation in a childBernadette Ricciardo MBBS (hon) DCH FACD PhD Candidate Bernadette.Ricciardo@telethonkids.org.au PhD Candidate Dr Bernadette Ricciardo is a PhD
Research
Feasibility and acceptability of implementing an evidence-based ESCALATION system for paediatric clinical deteriorationThe ESCALATION system is a novel paediatric Early Warning System that incorporates family involvement and sepsis recognition. This study aimed to assess the feasibility and iteratively refine the ESCALATION system in a variety of hospital settings in preparation for full-service implementation.
The Intervention and Infectious Disease Modelling group informs development and implementation of drugs, medical treatments and non-medical interventions to effectively tackle disease. They build mathematical models of diseases, designed to take into account the complex constellation of interactions between pathogens, humans, diseases, the environment and entire healthcare systems.
Biostatistics & Data Services