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        Research

        Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trials

        CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD). ...

        Research

        Requirements for improving health and well-being of children with Prader-Willi syndrome and their families

        Prader-Willi syndrome (PWS) is a rare genetic condition with multi-system involvement ...

        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 ...

        News & Events

        Telethon Kids study hopes to help kids with neuromuscular disorders sleep more easily

        Mackenzie was 10 months old when her parents, Jodie and Scott, were given the life-changing news that their daughter would never walk. ...

        Research

        TrialNet: Pathway to Prevention

        Liz Tim Davis Jones EA TW MBBS FRACP PhD MBBS DCH FRACP MD Head, Chronic & Severe Diseases Research Focus Area; Clinical Lead, Diabetes and Obesity ...

        Research

        Attention Deficit Hyperactivity Disorder

        Attention deficit hyperactivity disorder (ADHD) is the most commonly diagnosed childhood mental health disorder, affecting about 1 in 20 children. It can impact their behaviour, learning and social skills. ...

        Research

        A systematic review of prevention interventions to reduce prenatal alcohol exposure and fetal alcohol spectrum disorder in indigenous communities

        There is little evidence that previous interventions aiming to reduce the risk of prenatal alcohol exposure or FASD in Indigenous populations have been effective ...

        Research

        ARIEL study

        Anthony David Stephen Susan Kicic Martino Stick Prescott A DM SM SL BSc (Hons) PhD BSc PhD MB BChir PhD MRCP FRACP MBBS BMedSci PhD FRACP Rothwell ...

        Research

        Establishing a Western Australian Congenital and Acquired Heart Disease Database

        Jonathan Carapetis AM JR AM MBBS FRACP FAFPHM PhD FAHMS Executive Director; Head, Strep A Translation; Co-Founder of REACH 08 6319 1000 contact@ ...

        Research

        Defining the microbes in the middle ear and upper respiratory tract that lead to recurrent ear infections – a metagenomic study

        Sarra Timo Christopher Lea-Ann Ruth Deborah Jamieson Lassmann Blyth Kirkham Thornton Lehmann SE T CC LK RT D BSc (Hons) MSc PhD BSc (Hons) MSc PhD ...

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