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Can joined-up data lead to joined-up thinking? The Western Australian Developmental Pathways Project

Modern societies are challenged by "wicked problems" - by definition, those that are difficult to define, multi-casual and hard to treat.

Support Preferences and Clinical Decision Support Systems (CDSS) in the Clinical Care of Autistic Children: Stakeholder Perspectives

Clinical decision support systems (CDSS) are increasingly utilised within healthcare settings to enhance decision making. However, few studies have investigated their application in the context of clinical services for autistic people, with no research to date exploring the perspectives of the key stakeholders who are, or in the future may be, impacted by their use.

Personalized transcriptomics reveals heterogeneous immunophenotypes in children with viral bronchiolitis

Dysregulated expression of IFN-dependent pathways after respiratory viral infections is a defining immunophenotypic feature of AVB-susceptible infants

Vitamin D supplementation of initially vitamin D-deficient mice diminishes lung inflammation with limited effects on pulmonary epithelial integrity

In disease settings, vitamin D may be important for maintaining optimal lung epithelial integrity and suppressing inflammation, but less is known of its effects prior to disease onset.

Improving lung health of Aboriginal children hospitalised with chest infections – Aboriginal Children’s Excellent (ACE) Lung Health Study

The ACE project is led by Dr Pamela Laird and aims to improve post-hospitalisation follow-up of Indigenous children hospitalised with acute lower respiratory tract infections.

Using daily routines to support communication

In this blog, Senior Speech Pathologist Sally Grauaug and Speech Pathology Clinical Lead Aria May discuss how daily routines can facilitate the development of your child’s communication skills.

Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder

CDKL5 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.

Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorder

The 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.

Hospitalizations Following Complex Hip Surgery in Children with Intellectual Disability: A Self-Controlled Case Series Analysis

To evaluate the associations between complex hip surgery and subsequent hospitalizations in children with intellectual disability, including a subset of children with cerebral palsy.

Exploring sleep challenges in CDKL5 Deficiency Disorder

Sleep disturbance is a common and significant issue for individuals with CDKL5 Deficiency Disorder (CDD) and their families. The study aimed to investigate experiences of sleep disturbance in CDD and associated factors.