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        Effect of an exercise intervention (Move2Engage: Youth) on activity levels, quality of sleep and mental health outcomes in children and youth with movement difficulties

        Melissa Andrew Gail Jenny Licari Whitehouse Watch and listen to Andrew Alvares Downs ML AJ GA JA PhD PhD PhD BApplSci (physio) MSc PhD Senior Research Fellow Angela Wright Bennett Professor of Autism Research at Telethon Kids and University of ...

        Research

        Multi-site validation of a suite of clinical outcome measures for clinical trial readiness in the CDKL5 Deficiency Disorder

        Helen Jenny Peter Leonard Downs Jacoby HM JA PJ MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Principal Research Fellow Program Head, Development and Disability Biostatistician +61 419 956 946 08 6319 1763 helen.leonard@telethonkids.org.au ...

        Research

        Rett syndrome: establishing a novel outcome measure for walking activity in an era of clinical trials for rare disorders

        This study investigated the capacity of three accelerometer-type devices to measure walking activity in Rett syndrome ...

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        Linking MECP2 and pain sensitivity: the example of Rett syndrome

        This study investigated the nature and prevalence of atypical pain responses in Rett syndrome and their relationships with specific MECP2 mutations. ...

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        Stereotypical hand movements in 144 subjects with Rett syndrome from the population-based Australian database

        Stereotypic hand movements are a feature of Rett Syndrome but few studies have observed their nature systematically. ...

        Research

        Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin-dependent kinase-like 5 deficiency disorder

        Cyclin-dependent kinase-like 5 (CDKL5) gene pathogenic variants result in CDKL5 deficiency disorder (CDD). Early onset intractable epilepsy and severe developmental delays are prominent symptoms of CDD. Comorbid sleep disturbances are a major concerning symptom for families. ...

        Research

        Validating the rett syndrome gross motor scale

        The Rett Syndrome Gross Motor Scale could be an appropriate measure of gross motor skills in clinical practice and clinical trials ...

        Research

        Family satisfaction following spinal fusion in Rett syndrome

        Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on... ...

        Research

        Systematic Review and Meta-analysis: Early Irritability as a Transdiagnostic Neurodevelopmental Vulnerability to Later Mental Health Problems

        Irritability is a transdiagnostic indicator of child and adolescent internalizing and externalizing problems that is measurable from early life. The objective of this systematic review was to determine the strength of the association between irritability measured from 0 to 5 years and later internalizing and externalizing problems, to identify mediators and moderators of these relationships, and to explore whether the strength of the association varied according to irritability operationalization. ...

        Research

        Initial Validation and Reliability of the CDKL5 Deficiency Disorder Hand Function Scale (CDD-Hand)

        Pathogenic variants in the CDKL5 gene result in CDKL5 deficiency disorder (CDD), which is characterized by early-onset epilepsy, severe developmental delay, and often, cortical visual impairment. Validated clinical outcome measures are needed for future clinical trials to be successful. This study aimed to adapt the Rett Syndrome Hand Function Scale for CDKL5 deficiency disorder and evaluate its feasibility, acceptability, content validity, and reliability. ...

        Research

        Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study

        This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation. ...

        Research

        Profiling the Longitudinal Development of Babbling in Infants with Cerebral Palsy: Validation of the Infant Monitor of Vocal Production (IMP) Using the Stark Assessment of Early Vocal Development-Revised (SAEVD-R)

        We compared early vocal development in children "at risk" for cerebral palsy (CP) with typically developing (TD) infants aged 6 to 15 months using the SAEVD-R, investigating potential pre-linguistic markers of communication impairment. Additionally, we sought to examine the agreement between the SAEVD-R and IMP, which uses parent report, in identifying departure from typical vocal development in at-risk infants. ...

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