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        Family satisfaction following spinal fusion in Rett syndrome

        Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on... ...

        Research

        Spinal fusion in girls with Rett syndrome: Post-operative recovery and family experiences

        Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co-morbidity. Spinal fusion may be recommended if... ...

        Research

        Health conditions and their impact among adolescents and young adults with down syndrome

        The aim of this study was to examine the prevalence of medical conditions and use of health services among young adults with Down syndrome and describe the... ...

        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. ...

        Research

        Admissions in Children with Down Syndrome: Experience of a Population-Based Cohort Followed from Birth

        This study describes patterns of hospitalisations for children and young people with Down syndrome in Western Australia. ...

        Research

        Association of gestational age at birth with reasons for subsequent hospitalisation: 18 Years of follow-up in a Western Australian population study

        Preterm infants are at a higher risk of hospitalisation following discharge from the hospital after birth. ...

        Research

        The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life

        The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school... ...

        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

        Evaluation of the processes of family-centred care for young children with intellectual disability in Western Australia

        Authors: Wilkins A, Leonard H, Jacoby P, Mackinnon E, Clohessy P, Forouhgi S, Slack-Smith L. Authors notes: Child Care Health Dev. 2010 Sep;36(5):709-18. Epub 2010 Jun 12. Keywords: evaluation, processes, family-centred care, young children, ...

        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

        Parental experiences of scoliosis management in Rett syndrome

        Scoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management... ...

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