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Derbarl Yerrigan Health Service (DYHS) has developed a holistic paediatric service unit anchored in primary health care and underpinned by care coordination provided by an experienced nurse and multi-disciplinary team.
Research
Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorderThe CDKL5 Clinical Severity Assessment is a comprehensive, content-validated measurement tool capturing the diverse challenges of cyclin-dependent kinase-like 5 deficiency disorder, a genetically caused developmental epileptic encephalopathy. The CCSA is divided into clinician-reported and caregiver-reported assessments. The aim of this study was to evaluate the factor structure of these measures through confirmatory factor analysis and evaluate their validity and reliability.
Research
Content Validation of the Communication Inventory Disability–Observer Reported CID-ORCDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.
Research
AutismCharacterised by varying degrees of difficulties in communication skills and social abilities, one in every 100 individuals will have a diagnosis of an autism spectrum condition. While autism is known to run in families, the exact causes remain unknown.
Research
Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency DisorderCDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.
Research
Does gastrostomy improve the lives of children with severe disability and their families?Approximately 13,000 children in Australia live with moderate to severe intellectual disability.
News & Events
Helping WA kids through the state’s snap lockdownWA’s sudden lockdown has come as a shock to most of us. The Kids Research Institute Australia 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.
News & Events
Wal-yan respiratory researchers head to Milan to participate in international congressThe Wal-yan Respiratory Research Centre is proud to have a team of researchers taking part in, and contributing to, the outstanding scientific programme of the European Respiratory Society International Congress, taking place in Milan.
Our Child Health Analytics Team uses cutting-edge technologies to better understand how and why the health and wellbeing of children varies from place to place. We develop innovative geospatial methods that can harness large, complex datasets to pinpoint hotspots of elevated risk, evaluate change through time, and explore underlying drivers.
Research
The Wellbeing and Engagement Collection (WEC): Promoting the importance of students’ wellbeing and mental health in schoolso help raise the profile of student wellbeing in the education system in Australia, The Kids Research Institute Australia and SA Department for Education through the Fraser Mustard Centre, set out to adapt and trial a population-level student wellbeing measure that could be used across the entire public and p