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        A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome

        The aim of this study was to investigate the validity of using a Bouchard activity record (BAR) in individuals with Rett syndrome to measure physical... ...

        Research

        The development, content and response process validation of a caregiver-reported severity measure for CDKL5 deficiency disorder

        CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.  ...

        Research

        Evolving Trends of Gastrostomy Insertion Within a Pediatric Population

        New gastrostomy insertion among children who require long-term enteral feeding support increased over the study period ...

        Research

        Longitudinal bone mineral content and density in Rett syndrome and their contributing factors

        Bone mass and density are low in females with Rett syndrome. ...

        Research

        Resilience and Diabetes 2 (the RAD2 study)

        Anna Hunt AH DipTch, BEd Research Administrator 08 6319 1290 Anna.Hunt@telethonkids.org.au Research Administrator she/her/hers Anna Hunt is a Research Administrator with the Youth Mental Health team. Anna’s background is in teaching. She completed a ...

        Research

        Wellbeing and distress in young people with chronic conditions: how do positive psychology variables relate to mental health outcomes?

        The aim of this study was to determine the unique and shared contributions of various positive psychology constructs (gratitude, optimism, hope, self-compassion, self-efficacy, and emotion regulation) to wellbeing and distress outcomes in young people living with a diverse range of chronic health conditions.  ...

        Research

        We examined the impact of introducing a dedicated team to OPAT, to define the role of increased medical oversight in improving patient outcomes in this cohort.

        To evaluate the risk of stillbirth, PTB, and SGA as a proxy for FGR following exposure to one or more of these factors in a previous birth. ...

        Research

        A Population-Based Matched-Sibling Analysis Estimating the Associations Between First Interpregnancy Interval and Birth Outcomes

        Interpregnancy intervals of <6 months were associated with increased odds of preterm birth in second-born infants ...

        Research

        Neonatal outcomes after preterm birth by mothers' health insurance status at birth: a retrospective cohort study

        Publicly insured women usually have a different demographic background to privately insured women, which is related to poor neonatal outcomes after birth. ...

        Research

        Role of public and private funding in the rising caesarean section rate: A cohort study

        Our results indicate that an increase in the prelabour caesarean delivery rate for private patients in private hospitals has been driving the increase in the... ...

        Research

        Monitoring child abuse and neglect at a population level: patterns of hospital admissions for maltreatment and assault

        To investigate the prevalence, trends, and characteristics of maltreatment and assault related hospital admissions and deaths among children; ...

        Research

        Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study

        CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.  ...

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