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Health care utilization and costs for children and adults with duchenne muscular dystrophyThe annual economic cost of DMD was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood
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Cause-Specific Secular Trends and Prevention Measures of Post-Neonatally Acquired Cerebral Palsy in Victoria and Western Australia 1975–2014: A Population-Based Observational StudyTo describe the timing and causes of post-neonatally acquired cerebral palsy (PNN-CP) and map the implementation of relevant preventive strategies against cause-specific temporal trends in prevalence.
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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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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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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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Intellectual disability: Population-based estimates of the proportion attributable to maternal alcohol use disorder during pregnancyThe aim of this study was to examine the association between maternal alcohol use disorder and intellectual disability in children.
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The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome populationThis study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation...
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Health of mothers of children with intellectual disability or autism spectrum disorder: a review of the literatureThe deficits associated with intellectual disability (ID) and autism spectrum disorder (ASD)place a burden on their co-residing families which may impact...
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Initial assessment of the StepWatch Activity Monitor™ to measure walking activity in Rett syndromeIn girls and women with Rett syndrome, we assessed the accuracy of the StepWatch Activity Monitor™ and investigated relationships between daily step counts,...
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The common BDNF polymorphism may be a modifier of disease severity in Rett syndromeRett syndrome (RTT) is caused by mutations in the transcriptional repressor methyl CpG-binding protein 2 (MECP2).