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        169-180 of 492 results for 'CDKL5'

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        InterRett, a model for international data collection in a rare genetic disorder

        This study compared socio-demographic, clinical and genetic characteristics of the international database, InterRett, and the population-based Australian... ...

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        Feeding experiences and growth status in a Rett syndrome population

        Feeding difficulties in Rett syndrome are complex and multifactorial. In this study, we describe the feeding experiences in Rett syndrome and examine the... ...

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        Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

        To describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively. ...

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        Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?

        Mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables ...

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        Level of purposeful hand function as a marker of clinical severity in Rett syndrome

        Helen Peter Leonard Jacoby HM PJ MBChB MPH BA (Hons) MSc Principal Research Fellow Biostatistician +61 419 956 946 helen.leonard@telethonkids.org.au Peter.Jacoby@telethonkids.org.au Principal Research Fellow Biostatistician Authors: Downs J, ...

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        Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability

        Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe.  ...

        Research

        Onset of maternal psychiatric disorders after the birth of a child with intellectual disability: A retrospective cohort study

        Mothers of a child with intellectual disability (ID) have more psychiatric disorders after the birth of their child than other mothers. ...

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        Influence of the environment on participation in social roles for young adults with down syndrome

        The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and... ...

        Research

        Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome

        Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear ...

        Research

        Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome

        We investigated parental observations to identify QOL domains in children with Down Syndrome and determined whether domains differed between children and teens. ...

        Research

        Comorbidities and quality of life in children with intellectual disability

        Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. ...

        Research

        "The problem with running"-Comparing the propulsion strategy of children with Developmental Coordination Disorder and typically developing children

        Children with Developmental Coordination Disorder (DCD) often have difficulties running. ...

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