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        Research

        Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric study

        Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD. ...

        Research

        Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome

        Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear ...

        About

        Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected. ...

        Research

        It's not what you were expecting, but it's still a beautiful journey: The experience of mothers of children with Down syndrome

        The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome. ...

        Research

        Child protection involvement of children of mothers with intellectual disability

        Children born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research. ...

        Research

        Factors Influencing Postoperative Experiences in Adult Cochlear Implant Recipients: A Multistakeholder Perspective

        To explore factors influencing postoperative experiences of adult cochlear implant (CI) recipients, determine the impact of each factor, and conceptualize recipients' postoperative journey. ...

        Research

        Association between interpregnancy interval and adverse birth outcomes in women with a previous stillbirth: an international cohort study

        Conception within 12 months of a stillbirth was common and was not associated with increased risk of adverse outcomes in the subsequent pregnancy ...

        Research

        Risk of stillbirth, preterm delivery, and fetal growth restriction following exposure in a previous birth: Systematic review and meta-analysis

        Nonrecurrent risk of stillbirth, Preterm birth, and small for gestational age after exposure to one or more of these complications in a previous pregnancy ...

        Research

        Assessing the quality, efficiency and usefulness of the Western Australian population-based Intellectual Disability Exploring Answers (IDEA) surveillance system

        The IDEA system is a valuable resource to address the needs of people living with intellectual disability ...

        Research

        The impact of having a sibling with an intellectual disability:parental perspectives in two disorders

        This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents. ...

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