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        141-150 of 510 results for 'rett syndrome'

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        Research

        Barriers to diagnosis of a rare neurological disorder in China-Lived experiences of Rett syndrome families

        Fourteen of 74 Chinese families known to the International Rett Syndrome Phenotype Database participated in this qualitative study. ...

        Research

        The diagnostic odyssey to Rett syndrome: The experience of an Australian family

        The diagnosis of a rare disorder is dependent on the clinician's particular knowledge and experience, and can be challenging when the presentation is variable. ...

        Research

        Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidence

        To develop guidelines for the clinical management of scoliosis in Rett syndrome through evidence review and consensus expert panel opinion. ...

        Research

        Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder

        Our findings suggest that some opportunities do exist for clinicians to help optimise parental well-being ...

        Research

        The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population

        This study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation... ...

        Research

        Patterns of sedentary time and ambulatory physical activity in a Danish population of girls and women with Rett syndrome

        High levels of sedentary time and low daily step counts in a Danish population of females with Rett syndrome ...

        Research

        Atypical presentations and specific genotypes are associated with a delay in diagnosis in females with Rett syndrome

        There is often delay between onset of Rett syndrome symptoms and its diagnosis, possibly related to symptom presentation or socio-demographic factors. ...

        Research

        Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome

        Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children. ...

        Research

        Feasibility and Effectiveness of an Individualized 12-Week "Uptime" Participation (U-PART) Intervention in Girls and Women With Rett Syndrome

        The U-PART intervention was found to be feasible and effective in the short term in girls and women with Rett Syndrome ...

        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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