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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

Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trials

CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD).

First Nations Childhood Cancer Research

A first of its kind research program at The Kids Research Institute Australia aims to develop new strategies to better treat Aboriginal and Torres Strait Islander children with cancer.

Wendy

Wendy Mum of two kids, Joshua and Julia. ORIGINS project member and trial participant. I discovered that my son was allergic to nuts. After

Incorporating Children's Voices

Informing urban planning and policy development to grow equitable access to healthy environments for young people and their families.

Population pharmacokinetics of penicillin G: insights into increased clearance at low concentrations to guide development of improved long-acting formulations for syphilis

Although benzylpenicillin (penicillin G) is listed by the World Health Organization as an Essential Medicine, dose optimization is a persistent challenge, especially for long-acting intramuscular formulations. Maintaining sustained antibiotic exposure at target concentrations is crucial for secondary chemoprophylaxis of rheumatic heart disease and treatment of syphilis.

Patterns and trends in mortality of Western Australian infants, children and young people 1980-2008

This report is the third in a series examining patterns and trends in mortality among Western Australian infants, children and young people, and covers...

Professor James Dimmock

Honorary Research Associate

Psychological Flow Scale (PFS): Development and Preliminary Validation of a New Flow Instrument that Measures the Core Experience of Flow to Reflect Recent Conceptual Advancements

In this study, we sought to develop—and provide preliminary validity evidence for scores derived from—a new Psychological Flow Scale (PFS). We propose a parsimonious model of three core dimensions of flow, reflecting the findings from a recent scoping review that synthesised flow research across scientific disciplines.

Caregiver-mediated interventions to support self-regulation among infants and young children (0-5 years): A protocol for a realist review

Self-regulation is a modifiable protective factor for lifespan mental and physical health outcomes. Early caregiver-mediated interventions to promote infant and child regulatory outcomes prevent long-term developmental, emotional and behavioural difficulties and improve outcomes such as school readiness, educational achievement and economic success. To harness the population health promise of these programmes, there is a need for more nuanced understanding of the impact of these interventions.