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        Zika threat leads to Australian-first microcephaly study

        Mailing list MEDIA ENQUIRIES Be Inspired Media contacts Join thousands of active subscribers and hear about the brave kids, dedicated researchers, ...

        Research

        Are outcomes for childhood leukaemia in Australia influenced by geographical remoteness and Indigenous race?

        Presenting features, biology and outcome for childhood leukaemia are known to vary by ethnic origin, geographic location and socioeconomic group. This study aimed to compare presentation patterns, follow-up and clinical outcomes in Indigenous and non-Indigenous children with acute leukaemia in Australia, and to assess the impact of remoteness and area-based socioeconomic disadvantage on outcome. ...

        Research

        Parental perspectives on the communication abilities of their daughters with Rett syndrome

        How females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication ...

        Research

        Expanding the clinical picture of the MECP2 Duplication syndrome

        Perinatal characteristics, early childhood development and medical co-morbidities in MECP2 Duplication syndrome ...

        Research

        Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability

        Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe.  ...

        Research

        Genotype and sleep independently predict mental health in Rett syndrome: An observational study

        Rett syndrome is a genetically caused neurodevelopmental disorder associated with severe impairments and complex comorbidities. This study examined predictors of anxiety and depression in Rett syndrome, including genotype. ...

        Research

        qPCR assay optimisation for a clinical study comparing oral health risk in Rett syndrome

        This study aimed to validate qPCR assays for specific microbiota, for use on dental plaque samples stored on Whatman FTA cards to compare relative oral health risk in Rett syndrome. ...

        Research

        A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical Care

        Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.  ...

        Research

        Factors influencing the attainment of major motor milestones in CDKL5 deficiency disorder

        This study investigated the influence of factors at birth and in infancy on the likelihood of achieving major motor milestones in CDKL5 Deficiency Disorder (CDD). Data on 350 individuals with a pathogenic CDKL5 variant was sourced from the International CDKL5 Disorder Database. ...

        Research

        A preliminary investigation of the effects of prenatal alcohol exposure on facial morphology in children with Autism Spectrum Disorder

        While early exposure to alcohol may influence the development of facial structures, it does not appear to be associated with ASD phenotypic variability ...

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