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Research
Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency DisorderCDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.
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Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndromeTo evaluate the psychometric properties of the Quality of Life Inventory -Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.
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A meta-analytic review and conceptual model of the antecedents and outcomes of goal adjustment in response to striving difficultiesThere is growing interest in how and why individuals adjust their goals in response to difficulties encountered during goal striving and the outcomes of such adjustments; however, research on these topics is fragmented across theoretical perspectives and life domains.
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Evidence from Australian cohort studies about asthma trajectories and transitions across the life course: a narrative reviewAsthma affects more than 300 million people worldwide and is frequently associated with other medical conditions in adults, including chronic obstructive pulmonary disease, ischaemic heart disease, and stroke. Despite the huge burden, there has been little progress toward prevention and cure, possibly related to a one-size-fits-all approach.
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Truth-telling, truth-listening and opportunities for ensuring school cultural safety for Aboriginal students and Aboriginal educators in three primary schools in Western AustraliaThe Moombaki Research team developed a pilot Cultural Integrity Audit (CIA) that was co-designed with Aboriginal elders and educators as a tool for school leaders to measure the extent of culturally safe and responsive education at three test sites in Perth (Boorloo), Western Australia. This article analyses the political and social contexts and experiences of implementing the CIA as a tool – including the commitment, attitudes and values of school leaders.
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What Parents, Teachers and Clinicians Know About the Features of Developmental Dyslexia and Its Intervention: A Scoping ReviewDespite decades of research, misconceptions about developmental dyslexia remain widespread among those responsible for identifying and supporting affected children. Identifying the nature and persistence of these beliefs is essential to improving practice and policy. We conducted a scoping review to map the understanding of developmental dyslexia among teachers, parents and clinicians by identifying their beliefs about its features and interventions.
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Parents’ Work–Family Conflict and Children’s Emotional Well-Being: The Mediating Role of Parenting BehaviorsDespite growing evidence that parental work–family conflict (WFC) affects children’s emotional well-being, little is known about the multiple pathways underlying such effects. This study examines the association between parental WFC and children’s emotional well-being and the potential mediating role of parenting behaviors in this process.
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Whose rural? Shaping rural psychiatry training in Aotearoa New ZealandDefining rurality matters in healthcare. Evidence supports the singularity of the rural experience and its detrimental impact on health outcomes and, specifically, on mental health. Yet, no internationally accepted definition of 'rural' exists.
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Estimating the impact of Western Australia's first respiratory syncytial virus immunisation program for all infants: A mathematical modelling studyThe Australian Therapeutic Goods Administration approved the use of nirsevimab, a long-acting monoclonal antibody for the prevention of Respiratory Syncytial Virus (RSV), in November 2023. Western Australia (WA) implemented a combination of nirsevimab administration strategies designed to protect all infants starting in April 2024, before the epidemic season. We developed a dynamic transmission model to predict the impact of WA's RSV immunisation program on infant hospitalisations.
Research
Effects of ganaxolone on non-seizure outcomes in CDKL5 Deficiency Disorder: Double-blind placebo-controlled randomized trialCDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Ganaxolone, a neuroactive steroid, reduces the frequency of major motor seizures in children with CDD. This analysis explored the effect of ganaxolone on non-seizure outcomes.