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Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD.
Children in out-of-home care participate in less organised sport than children from other household structures, potentially reducing opportunities for improvements in social, developmental, and health outcomes. Despite this, little is known about barriers and facilitators of sport participation for children in care. We aimed to explore carers' perspectives on the influences on children in care's participation and experiences in organised sport.
Paediatric cancer is the leading cause of disease-related death in Australian children. Limited research focuses on cancer in Aboriginal and Torres Strait Islander children. Although there appears to be a lower incidence of cancer overall in Aboriginal and Torres Strait Islander children compared with non-Indigenous children, a high proportion of Aboriginal and Torres Strait Islander children are diagnosed with acute myeloid leukaemia.
The current narrative surrounding children’s health and wellbeing often focuses on adversity and dysregulation with a lack of positive messaging. However, promoting protective and buffering factors may be as important as reducing adverse exposures. While the concept of flourishing is commonly applied in the context of adults, defining what flourishing means for children in current academic literature remains unclear.
One third of children require repeat ventilation tube insertion (VTI) for otitis media. Disease recurrence is associated with persistent middle ear bacterial biofilms. With demonstration that Dornase alfa (a DNase) disrupts middle ear effusion biofilms ex vivo, we identified potential for this as an anti-biofilm therapy to prevent repeat VTI. First, safety and tolerability needed to be measured.
Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders. Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.
CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.
Participation in sport is associated with a range of physical, psychological, and social benefits. However, children in out-of-home care face complex barriers to sport participation, with lower participation rates than children in other household arrangements.
To determine the ability to accurately diagnose acute rheumatic fever given the resources available at three levels of the Ugandan healthcare system.
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.