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        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

        Measurement of Sedentary Behaviors or "downtime" in Rett Syndrome

        This study aimed to validate measures of sedentary time in individuals 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 ...

        Research

        Community participation for girls and women living with Rett syndrome

        This paper aimed to describe the relationships between level of impairment and participation in community activities for girls and women with Rett syndrome. ...

        Research

        Twenty years of surveillance in Rett syndrome: what does this tell us?

        This study aimed to describe overall survival and adult health in those with Rett syndrome. ...

        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

        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

        Rett Syndrome: Revised diagnostic criteria and nomenclature

        The purpose of this work was to revise and clarify 2002 consensus criteria for the diagnosis of RTT in anticipation of treatment trials. ...

        Research

        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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