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Research

Changes in the clinical and epidemiological features of group A streptococcal bacteraemia in Australia's northern territory

We aimed to measure the incidence and severity of invasive Group A Strep disease in the NT since 1996.

Research

Utility of auscultatory screening for detecting rheumatic heart disease in high-risk children in Australia's Northern Territory

Sensitivity and positive predictive value of cardiac auscultation compared with echocardiography is poor, regardless of the expertise of the auscultator.

Research

Effects of dog ownership on children’s social-emotional development: findings from the PLAYCE cohort study

Dog ownership is common in families with children and could play a role in children's social-emotional development. This study used longitudinal data on dog ownership and changing dog ownership to investigate their effects on young children's social-emotional development.

Research

Residential mobility amongst children and young people in Wales: A longitudinal study using linked administrative records

Child poverty remains a major global concern and a child's experience of deprivation is heavily shaped by where they live and the stability of their local neighbourhood. This study examines frequencies and patterns of residential mobility in children and young people at a population level using novel geospatial techniques to assess how often their physical environment changes and to identify geographical variations in social mobility.

Research

A critical discussion of pediatric gender measures to clarify the utility and purpose of “measuring” gender

Pediatric gender clinics and researchers commonly use scales to measure different dimensions of gender (e.g. identity, dysphoria, satisfaction). There has been little investigation into the relevance and consumer acceptability of these scales within contemporary understandings and experiences of gender. 

Research

What happens at two? Immunisation stakeholders’ perspectives on factors influencing sub-optimal childhood vaccine uptake for toddlers in regional and remote Western Australia

In Western Australia (WA), children aged 24 months living regionally or remotely (non-urban) have suboptimal vaccine uptake. As there has not yet been a systematic approach to understanding the facilitators and barriers to childhood vaccination in regional and remote WA, this study aimed to understand the views of key immunisation stakeholders regarding barriers and solutions.

Research

Dietary patterns during pregnancy and maternal and birth outcomes in women with type 1 diabetes: the Environmental Determinants of Islet Autoimmunity (ENDIA) study

Dietary patterns characterised by high intakes of vegetables may lower the risk of pre-eclampsia and premature birth in the general population. The effect of dietary patterns in women with type 1 diabetes, who have an increased risk of complications in pregnancy, is not known. 

Research

Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials

Existing clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies.

Research

Italian Version of QI-Disability for QoL Evaluation in Children and Adolescents with Intellectual Disability: Translation and Cross-Cultural Adaptation Process

Children and adolescents with Intellectual Disability experience a worse Quality-of-Life (QoL) relative to typically developing peers. Thus, QoL evaluation is important for identifying support needs and improving rehabilitation effectiveness. Nevertheless, currently in Italy there are not tools with this scope. This study aims to translate and cross-culturally adapt the Quality-of-Life Inventory-Disability into Italian.

Research

International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USA

The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.