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Multi-site validation of a suite of clinical outcome measures for clinical trial readiness in the CDKL5 Deficiency Disorder

Helen Jenny Peter Leonard Downs Jacoby MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Principal Research Fellow Head, Child Disability

Piloting a self-compassion program to promote physical and psychological wellbeing in youth with T1D

Amy Keely Liz Megan Asha Finlay-Jones Bebbington Davis Ansell Parkinson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) MClinPsych/PhD

Projects

Stopping Acute Rheumatic Fever Infections to Strengthen Health

Meningococcal Disease

Meningococcal disease is caused by the bacteria Neisseria meningitidis, or 'meningococcus'. It is an uncommon but very serious disease that can result in death if not recognised and treated quickly.

Population Perspectives on Nurturing Relational Health from Early Life: A Systematic Review Series

This paper provides the conceptual framework for a new review series that bring together the global literature on population approaches to nurturing relational health across the first three years of life. Early relational health is defined as ‘the everyday interactions that happen between children and their carers across the many settings in which they live and grow.

The presentation of dissociative symptoms in childhood and early adolescence: A systematic review and thematic synthesis of 30 case studies

Dissociative disorders in children and young adolescents are under-recognised and under-treated. Current diagnostic criteria rely on downward extensions of adult models and do not adequately consider developmental differences in younger populations. This reliance risks overlooking symptom patterns that may be unique in childhood, thereby perpetuating diagnostic gaps and delayed treatment. 

Reach and perceived effectiveness of a community-led active outreach postvention intervention for people bereaved by suicide

Postvention is a core component of suicide prevention strategies, internationally. However, the types of supports provided to people impacted by suicide vary widely. This study examines the perceived effectiveness of the Primary Care Navigator (PCN) model for people bereaved by suicide. The PCN model was implemented in response to a suicide cluster.

Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin-dependent kinase-like 5 deficiency disorder

Cyclin-dependent kinase-like 5 (CDKL5) gene pathogenic variants result in CDKL5 deficiency disorder (CDD). Early onset intractable epilepsy and severe developmental delays are prominent symptoms of CDD. Comorbid sleep disturbances are a major concerning symptom for families.

Study Protocol for a Randomised Controlled Trial Investigating the Effects of Maternal Prebiotic Fibre Dietary Supplementation from Mid-Pregnancy to Six Months’ Post-Partum on Child Allergic Disease Outcomes

Infant allergy is the most common early manifestation of an increasing propensity for inflammation and immune dysregulation in modern environments. Refined low-fibre diets are a major risk for inflammatory diseases through adverse effects on the composition and function of gut microbiota. This has focused attention on the potential of prebiotic dietary fibres to favourably change gut microbiota, for local and systemic anti-inflammatory effects.

Mind the distance: experiences of non-face-to-face child and youth mental health services during COVID-19 social distancing restrictions in Western Australia

Following the outbreak of COVID-19, social distancing restrictions limited access to face-to-face mental health services in Western Australia (WA), necessitating a rapid transition to non-face-to-face alternatives, including telehealth. The current study investigated barriers and facilitators to telehealth access and engagement, and preferences for child and youth mental health service delivery during and beyond COVID-19.