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        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

        Cannabis for refractory epilepsy in children: A review focusing on CDKL5 Deficiency Disorder

        This review provides the first comprehensive overview of the potential role for cannabis based preparations in the treatment of CDKL5 Deficiency Disorder ...

        Research

        A Population-Based Matched-Sibling Analysis Estimating the Associations Between First Interpregnancy Interval and Birth Outcomes

        Interpregnancy intervals of <6 months were associated with increased odds of preterm birth in second-born infants ...

        Research

        Risk factors for hospitalizations associated with depression among women duringthe years around a birth: a retrospective cohort study

        Results provide preliminary evidence that barriers to treating depression with anti-depressants in mothers from low income areas during the years around a birth ...

        Research

        Management of oral and dental problems in Rett syndrome: a narrative review of the literature

        Review of the available dental literature on assessment and management of the oral manifestations of Rett syndrome ...

        Research

        We examined the impact of introducing a dedicated team to OPAT, to define the role of increased medical oversight in improving patient outcomes in this cohort.

        To evaluate the risk of stillbirth, PTB, and SGA as a proxy for FGR following exposure to one or more of these factors in a previous birth. ...

        Research

        Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure

        Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability ...

        Research

        Building the repertoire of measures of walking in Rett syndrome

        This study aimed to determine measurement properties of a modified 2MWT and a modified Rett syndrome-specific FMS-RS in Rett syndrome. ...

        Research

        Facilitators and Barriers of Participation in “Uptime” Activities in Girls and Women With Rett Syndrome: Perspectives From Parents and Professionals

        This study explored facilitators and barriers to "uptime" (non-sedentary) activities in Danish girls and women with Rett syndrome ...

        Research

        Quality of Life and Psychosocial Well-Being in Youth With Neuromuscular Disorders Who Are Wheelchair Users: A Systematic Review

        To investigate quality of life (QOL) and psychosocial well-being in youth with neuromuscular disorders (NMDs) who are wheelchair users. ...

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