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        337-348 of 575 results for 'fasd'

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        Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy

        This study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives ...

        Research

        Investigating falls in adults with intellectual disability living in community settings and their experiences of post-fall care services

        This study will determine the rate of falls among older adults with ID living in community based settings, which will assist to identify the extent of this problem ...

        Research

        Gastrointestinal dysmotility in rett syndrome

        Through evidence review and the consensus of an expert panel, we developed recommendations for the clinical management of gastroesophageal reflux disease,... ...

        Research

        A brief history of MECP2 duplication syndrome: 20-years of clinical understanding

        MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder caused by a duplication of the methyl-CpG-binding protein 2 (MECP2) gene-a gene in which loss-of-function mutations lead to Rett syndrome (RTT). MDS has an estimated live birth prevalence in males of 1/150,000. ...

        Research

        CDKL5 deficiency disorder: clinical features, diagnosis, and management

        CDKL5 deficiency disorder (CDD) was first identified as a cause of human disease in 2004. Although initially considered a variant of Rett syndrome, CDD is now recognised as an independent disorder and classified as a developmental epileptic encephalopathy. ...

        Research

        Change in Gross Motor Abilities of Girls and Women With Rett Syndrome Over a 3- to 4-Year Period

        We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database ...

        Research

        The perceived effects of cannabis products in the management of seizures in CDKL5 Deficiency Disorder

        CDKL5 Deficiency Disorder (CDD) is a severe treatment-resistant form of early-onset epilepsy. Current treatment options are often ineffective and associated with adverse effects, forcing families to seek alternative therapies for their children including products derived from cannabis. Reportsof miraculous cures and a public preferencefor 'natural' therapies have resulted in considerable public interest, and so this study aimed to characterize the use of cannabis in these individuals, as well as compare caregiver perceptions of efficacy and safety to objective evidence of seizure control and number of antiepileptic drugs used. ...

        Research

        Online self-compassion training to improve the wellbeing of youth with chronic medical conditions: Protocol for a randomised control trial

        The Self-Compassion Online program could provide a scalable solution for improving psychological outcomes and quality of life among youth with chronic illness ...

        Research

        Perinatal Women’s Perspectives of, and Engagement in, Digital Emotional Well-Being Training: Mixed Methods Study

        Psychological distress in the early postpartum period can have long-lasting deleterious effects on a mother's well-being and negatively affect her infant's development. Intervention approaches based in contemplative practices such as mindfulness and loving-kindness and compassion are intended to alleviate distress and cultivate well-being and can be delivered effectively as digital mental health interventions. ...

        Research

        Wellbeing and distress in young people with chronic conditions: how do positive psychology variables relate to mental health outcomes?

        The aim of this study was to determine the unique and shared contributions of various positive psychology constructs (gratitude, optimism, hope, self-compassion, self-efficacy, and emotion regulation) to wellbeing and distress outcomes in young people living with a diverse range of chronic health conditions.  ...

        Research

        Assessing The Validity Of A Culturally Modified Drinking Motives Questionnaire For Use In Aboriginal Communities

        Alcohol related harms disproportionately affect Aboriginal people in Australia. Motives to drink have been identified as the most proximal factor to alcohol consumption.The aim of this study is to assess the validity of a culturally modified Drinking Motives Questionnaire-Revised (DMQ-R) (Cooper, 1994) with Aboriginal participants. The study was cross sectional, utilising data collected via face-to-face surveys with a sample of adult Aboriginal participants. ...

        Research

        Perspectives on hand function in girls and women with Rett syndrome

        Hand function is particularly affected and we discuss theoretical and practical perspectives for optimising hand function in Rett syndrome. ...

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