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Research
Caregivers' Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online SurveyCyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) is an ultrarare genetic condition causing developmental epileptic encephalopathy characterized by seizures and motor and intellectual disabilities. No disease-modifying therapies are available, and treatments focus mainly on symptom management to improve quality of life.
More than 3,000 skin checks have been undertaken as part of a large clinical trial in WA’s Kimberley region aimed at halving the burden of skin sores in school-aged Aboriginal children.
Research
Parents’ Disclosure of Their Child’s Health and Neurodevelopmental Conditions: A Systematic Review and Qualitative MetasynthesisParents of children with physical/mental health and/or neurodevelopmental conditions often need to make disclosure decisions for their child. Disclosure can bring benefits (e.g., support) but can also risk harm (e.g., stigma). This systematic review aimed to consolidate research regarding parents' disclosure experiences to better understand how to support parents during this process.
Research
The perspectives of autistic adolescents and their parents on sleep strategies for insomniaAutistic adolescents are vulnerable to sleep difficulties, with up to 80 % experiencing sleep problems, most commonly insomnia. Little is known about how autistic adolescents are involved in their own sleep treatment, and their depth of knowledge about their sleep difficulties. The aims of this study were to investigate autistic adolescent and parent perspectives of experiencing and managing insomnia, and what factors influence the development of these perspectives on insomnia and treatment.
News & Events
Aboriginal health research leader first recruit in national strategic partnershipDr Alex Brown to take up a new appointment as Professor of Indigenous Genomics.
News & Events
WA health experts say junk food and sugary drink sponsorships have no place in sportWA’s peak public health and medical experts have united in their call to end the sponsorship of sport by junk food companies.
News & Events
The Kids Research Institute Australia researcher wins Forrest Prospect Fellowship to examine youth suicide clustersA youth mental health researcher aiming to map suicide hotspots and avert further suicides in WA has been awarded a prestigious fellowship from the Forrest Research Foundation.
News & Events
Major funding boost for innovative Yawardani Jan-ga programA trail-blazing Aboriginal-led program which uses equine-assisted learning to address the urgent needs of young Aboriginal people across the Kimberley has been given a major funding boost, thanks to a generous grant from Healthway.
News & Events
Big data expert appointed Kerry M Stokes Chair of Child Health ResearchAn international leader in the analysis and mapping of big data sets to tackle disease has been appointed The Kerry M Stokes Chair of Child Health.
News & Events
The Impact of Poverty - interview with Steve ZubrickGrowing up poor is about more than just the size of your bank account. Read the new CoLab Impact of Poverty Evidence Report.