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        News & Events

        Getting kids into gear for learning

        Researchers from the Telethon Kids Institute are running a school program designed to help children adjust their levels of alertness and attention in class. ...

        Research

        Expanding the phenotype of the CDKL5 deficiency disorder: Are seizures mandatory?

        These cases, both without seizures but with apparent behavioral symptomatology, together question whether seizures are mandatory in this disorder ...

        Research

        There is variability in the attainment of developmental milestones in the CDKL5 disorder

        Individuals with the CDKL5 disorder have been described as having severely impaired development. ...

        News & Events

        FAQ's - Mandatory fortification with folate

        Mandatory fortification with folate frequently asked questions, answered. ...

        Research

        Use of the ketogenic diet to manage refractory epilepsy in CDKL5 disorder

        In view of its side effect profile, ketogenic diet (KD) administration should be supervised by a pediatric neurologist and specialist dietician. ...

        Research

        Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

        Investigate impacts on maternal health and family quality of life in families with a child with the CDKL5 disorder ...

        Research

        The development, content and response process validation of a caregiver-reported severity measure for CDKL5 deficiency disorder

        CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.  ...

        Research

        Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder

        CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist. ...

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        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 ...

        News & Events

        Guest article: What it's like to live with Tourette Syndrome

        Conor Maysey was a guest on Dr Alix Woolard's podcast, Embracing the Mind. ...

        Youth Mental Health

        The Youth Mental Health team's mission to improve the mental health of young people in Western Australia and beyond. ...

        News & Events

        Pioneering technique opens new window on first week of life

        An international team of researchers has pioneered a technique which gives unprecedented insight into the dramatic changes occurring in a baby’s body in the first week of life. ...

        News & Events

        Elders insight leads to spine-tingling breakthrough

        Dr Michael Wright remembers the 'aha' moment while working with distressed Nyoongar families to identify what was limiting engagement with services. ...

        News & Events

        Census data reveals stark gap in asthma risk for inner and outer city kids

        Children who live in the outer suburbs of Australia’s four biggest cities are twice as likely to have asthma as those living in inner city areas, according to a new study based on health data captured in the last Australian Census. ...

        News & Events

        Healthway supports innovative mental health, physical activity research at Telethon Kids

        Telethon Kids Institute and The University of Western Australia researchers have been awarded more than $1 million in funding from Healthway, for projects to improve the mental health of LGBTQA+ young people, encourage early physical activity in childcare centres and create healthier local environme ...

        News & Events

        Helping WA kids through the state’s snap lockdown

        WA’s sudden lockdown has come as a shock to most of us. Telethon Kids Institute researcher and psychologist Dr Monique Robinson says parents should keep a close eye on their children who may be feeling anxious or disappointed as a result. ...

        Research

        Pacific Early Age Readiness and Learning (PEARL) Programme in Tonga

        Alanna Mailing list media enquiries Sincovich Be Inspired Media Contacts AS Join thousands of active subscribers and hear about the brave kids, ...

        News & Events

        Telethon Kids researchers who helped identify rare disorder now poised to help the hunt for treatment

        Two Telethon Kids Institute researchers recognised for their role in building a global database for CDKL5 deficiency disorder are now helping to set the scene for clinical trials of much-needed potential treatments. ...

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