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        Research

        Rett syndrome: Establishing a novel outcome measure for walking activity in an era of clinical trials for rare disorders

        Rett syndrome is a pervasive neurological disorder with impaired gait as one criterion. ...

        Research

        Clinical guidelines for management of bone health in rett syndrome based on expert consensus and available evidence

        A clinically significant history of fracture in combination with low bone densitometry findings is necessary for a diagnosis of osteoporosis in Rett Syndrome ...

        Research

        Parental perspectives on the communication abilities of their daughters with Rett syndrome

        How females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication ...

        Research

        A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome

        The aim of this study was to investigate the validity of using a Bouchard activity record (BAR) in individuals with Rett syndrome to measure physical... ...

        Research

        Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype

        Prevalence and determinants of sleep problems in Rett syndrome ...

        Research

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

        We aimed to: (1) describe the patterns of sedentary time and daily steps and (2) identify the association of individual and environmental characteristitics. ...

        Research

        Community participation for girls and women living with Rett syndrome

        Participation for girls and women with Rett syndrome could be enhanced by stronger local community supports. ...

        Research

        Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome

        This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic... ...

        Research

        Survival with Rett syndrome: comparing Rett's original sample with data from the Australian Rett syndrome Database

        Rett syndrome is a severe neurodevelopmental disorder that typically affects females. Little is known about the natural history and survival time of these femal ...

        Research

        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 ...

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