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        97-108 of 147 results for 'aboriginal health history'

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        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

        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

        The trajectories of sleep disturbances in Rett syndrome

        This paper demonstrated that the evolution of sleep problems differed between subgroups of girls and women with Rett syndrome, in part explained by age and... ...

        Research

        Experience of gastrostomy using a quality care framework: The example of rett syndrome

        Gastrostomy assisted the management of feeding difficulties and poor weight gain, and was acceptable to families ...

        Research

        Content Validation of Clinician-Reported Items for a Severity Measure for CDKL5 Deficiency Disorder

        CDKL5 deficiency disorder (CDD) results in early-onset seizures and severe developmental impairments. A CDD clinical severity assessment (CCSA) was previously developed with clinician and parent-report items to capture information on a range of domains. ...

        Research

        Does gastrostomy improve the lives of children with severe disability and their families?

        Emma Helen Jenny Peter Glasson Leonard Downs Jacoby EJ HM JA PJ BPsych BSc (Hons) PhD MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Senior Research Fellow Principal Research Fellow Program Head, Development and Disability Biostatistician +61 ...

        Research

        Gross Motor Profile in Rett Syndrome as Determined by Video Analysis

        This study used video supplemented by parent report data to describe the gross motor profile in females with Rett syndrome (n=99) and to investigate... ...

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        Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study

        Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry to evaluate associations between child behaviours and caregiver mental well-being. ...

        Research

        Relationship between family quality of life and day occupations of young people with Down syndrome

        This study aimed to explore relationships between family quality of life, day occupations and activities of daily living of young persons with Down syndrome. ...

        Research

        Family satisfaction following spinal fusion in Rett syndrome

        We evaluated family satisfaction following spinal fusion in girls with Rett syndrome ...

        Research

        Daytime sleepiness and emotional and behavioral disturbances in Prader-Willi syndrome

        Individuals with Prader-Willi syndrome (PWS) often have excessive daytime sleepiness and emotional/behavioral disturbances. The objective of this study was to examine whether daytime sleepiness was associated with these emotional/behavioral problems, independent of nighttime sleep-disordered breathing, or the duration of sleep. ...

        Research

        Validation of intellectual disability coding through hospital morbidity records using an intellectual disability population-based database in Western Australia

        To investigate how well intellectual disability (ID) can be ascertained using hospital morbidity data compared with a population-based data source. ...

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