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Research

Understanding wellbeing from the perspective of youth with chronic conditions: A group concept mapping approach

Promoting wellbeing for youth is a global health priority and young people with chronic conditions demonstrate disproportionately low wellbeing compared to their peers. However, wellbeing is variably defined, and little is understood as to what wellbeing means for this population. The aim of this study was to develop a conceptualisation of wellbeing that is rooted in the perspectives of young people with chronic conditions. 

Research

Empowering quality education through sustainable and equitable electricity access in African schools

Although most people born this century will be educated in African schools, these schools often lack basic infrastructure, such as electricity and/or lighting. In the face of a rapidly growing school-age population in Africa, the electrification of educational facilities is not just an infrastructural challenge but also a pivotal investment in the continent’s future workforce.

Research

Neurodevelopmental impairment in children with Robin sequence: A systematic review and meta-analysis

Estimate the global prevalence of neurodevelopmental impairment in children with Robin sequence (RS) at one year or more of age.

Research

Maternal concentrations of perfluoroalkyl sulfonates and alterations in white matter microstructure in the developing brains of young children

Maternal exposure to per- and polyfluoroalkyl substances (PFAS) has been linked to child neurodevelopmental difficulties. Neuroimaging research has linked these neurodevelopmental difficulties to white matter microstructure alterations, but the effects of PFAS on children's white matter microstructure remains unclear.

Research

Proposed Core Outcomes After Neonatal Sepsis: A Consensus Statement

Sepsis is one of the leading causes of neonatal mortality. There is heterogeneity in the outcomes measured and reported in studies of neonatal sepsis. To address this challenge, a core outcome set (COS) for research on neonatal sepsis was needed.

Research

Perinatal psychiatric emergencies in rural Australia: In urgent need of attention

The burden of perinatal mental illness is a significant global concern, affecting approximately 10–20% of women at this stage of life. It is well recognised that Rural Australia has far less health services and mental health specialists per capita than metropolitan regions. 

CDKL5 Publications

Publications from 2017 dating back to 2004 of CDKL5 researchers.

Our Research

We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.

Parental perspectives on the communication abilities of their daughters with Rett syndrome

We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.

Clinical severity and X-chromosome inactivation

For this study, we examined how Rett syndrome characteristics can be affected by X-inactivation for 2 of the common types of mutation - p.R168X and p.T158M.