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Research
Heritable and environmental determinants of hospitalisation for common childhood illnessesWe will leverage the unique Western Australian data linkage resources to undertake the definitive twin and sibling study of infection-related hospitalisation
The Health of Aboriginal Children and Young People
Research
Start Stronger, Live Longer Resource Manual for Aboriginal Health WorkersThis resource kit for Aboriginal health workers is an exciting milestone in the Rio Tinto Aboriginal Health partnership with The Kids Research Institute Australia
ACCARE provides high level advice to the Institute's Director around strategic directions and operational elements relating to Aboriginal health research
Research
GAMA projectThis study investigated host gene expression in response to new HIV infection.
While COVID-19 is new and frightening, these resources are designed to help families tackle the challenges this virus has created for us.
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
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
Functional characterization of the MED12 p.Arg1138Trp variant in females: implications for neural development and disease mechanismSeven female individuals with multiple congenital anomalies, developmental delay and/or intellectual disability have been found to have a genetic variant of uncertain significance in the mediator complex subunit 12 gene. The functional consequence of this genetic variant in disease is undetermined, and insight into disease mechanism is required.
Research
Pediatric Bronchiectasis Action Management Plan to Improve Clinical Outcomes: A Randomized Controlled TrialManaging bronchiectasis exacerbations is a priority for patients, parents, and caregivers of children with bronchiectasis. However, evidence-based strategies among the pediatric population remain limited.