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        Research

        The Lived Experience of Parents’ Receiving the Diagnosis of CDKL5 Deficiency Disorder for Their Child

        CDKL5 deficiency disorder (CDD), a severe developmental and epileptic encephalopathy, is being diagnosed earlier with improved access to genetic testing, but this may also have unanticipated impacts on parents’ experience receiving the diagnosis. This study explores the lived experience of parents receiving a diagnosis of CDD for their child using mixed methods. ...

        Caring for caregivers

        Tips from other caregivers Additional resources Take time out for yourself; maintain your interests. Don’t ignore your own health problems. Don’t try ...

        Research

        Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Clinical Review

        Clinical presentations and genetic variations in Cyclin-dependent kinase-like 5 deficiency disorder based on a systematic literature review and experience ...

        Research

        Risk and protective factors for the health of primary care-givers of children with autism spectrum disorders or ID: a narrative review

        We aimed to review original research which described factors impacting the health of primary care-givers of children with Autism or Intellectual Disability ...

        Research

        Epidemiology of Rare Craniofacial Anomalies: Retrospective Western Australian Population Data Linkage Study

        We aimed to describe birth prevalence of rare craniofacial anomalies and associations with antenatal and perinatal factors. All live and stillbirths in Western Australia between 1980 and 2010 were identified from the Western Australian Birth Registrations and the Midwives Notification System (also provides information on antenatal and perinatal factors). ...

        Research

        Maternal Psychiatric Disorder and the Risk of Autism Spectrum Disorder or Intellectual Disability in Subsequent Offspring

        This study adds to existing evidence that the rate of pre-existing psychiatric disorders in mothers of children with autism spectrum disorder is higher than... ...

        Research

        Experiences Impacting the Quality of Life of Mothers of Children With Autism and Intellectual Disability

        Mothers of autistic children and adults bewtween 11 and 24 years old were interviewed about the impacts and rewards associated with their children's disability. ...

        Research

        Physical and mental health in mothers of children with Down syndrome.

        Physical and mental health in mothers of children with Down syndrome. ...

        Research

        Feasibility of assessing diet with a mobile food record for adolescents and young adults with down syndrome

        The aim was to assess the feasibility of assessing diet with an image-based mobile food record application in 51 adolescents and young adults with Down syndrome. ...

        Research

        Sleep-disordered breathing in Australian children with Prader-Willi syndrome following initiation of growth hormone therapy

        In children with Prader-Willi syndrome (PWS), growth hormone (GH) improves height and body composition; however, may be associated with worsening sleep-disordered breathing (SDB). Some studies have reported less SDB after GH initiation, but follow-up with polysomnography is still advised in most clinical guidelines. ...

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