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International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USAThe clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.
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Role of public and private funding in the rising caesarean section rate: A cohort studyOur results indicate that an increase in the prelabour caesarean delivery rate for private patients in private hospitals has been driving the increase in the...
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Dental admissions in children under two years - A total-population investigationThis paper describes dental and oral cavity admissions and associated factors in children under two years of age using total-population databases.
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Neonatal outcomes after preterm birth by mothers' health insurance status at birth: a retrospective cohort studyPublicly insured women usually have a different demographic background to privately insured women, which is related to poor neonatal outcomes after birth.
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Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983-1999: A population-based cohort studyID and/or ASD were found to be associated with an increased risk of hospitalisation compared with the remainder of the population.
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Approaches to study the lifelong trajectories of children with neurodevelopmental conditionsWe argue that population-based studies are critical to overcome the selection bias seen in many clinical samples and to identify true variability within a...
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"The problem with running"-Comparing the propulsion strategy of children with Developmental Coordination Disorder and typically developing childrenChildren with Developmental Coordination Disorder (DCD) often have difficulties running.
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Italian Version of QI-Disability for QoL Evaluation in Children and Adolescents with Intellectual Disability: Translation and Cross-Cultural Adaptation ProcessChildren and adolescents with Intellectual Disability experience a worse Quality-of-Life (QoL) relative to typically developing peers. Thus, QoL evaluation is important for identifying support needs and improving rehabilitation effectiveness. Nevertheless, currently in Italy there are not tools with this scope. This study aims to translate and cross-culturally adapt the Quality-of-Life Inventory-Disability into Italian.
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Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorderThe CDKL5 Clinical Severity Assessment is a comprehensive, content-validated measurement tool capturing the diverse challenges of cyclin-dependent kinase-like 5 deficiency disorder, a genetically caused developmental epileptic encephalopathy. The CCSA is divided into clinician-reported and caregiver-reported assessments. The aim of this study was to evaluate the factor structure of these measures through confirmatory factor analysis and evaluate their validity and reliability.
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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.