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Showing results for "clinical trials"
Loss of hand function is a core feature of Rett syndrome. This article describes longitudinal hand function at 3 time points for 72 subjects participating...
Scoliosis is a common orthopaedic complication of Rett syndrome, and surgery is commonly used to reduce asymmetry in cases with severe scoliosis.
The aims of the present study were to (i) examine the relationship between children's degree of adiposity and psychosocial functioning; and (ii) compare patterns of clustering of psychosocial measures between healthy weight and overweight/obese children.
One way the Wal-yan Respiratory Research Centre provides the opportunity for consumers and community members to contribute to our research is through participation in one of our eight community reference groups.
This study aimed to evaluate and compare the effectiveness of two brief written anti-stigma resources.
Qualitative research on sensitive topics (e.g. abuse, mental health difficulties, discrimination) is needed to understand lived experiences of complex issues. However, this type of research raises concerns about potential adverse effects on participants, especially with younger participants and those from marginalized populations. In this study, we conducted a reflexive thematic analysis of 20 trans adolescents’ (14–18 years of age) experiences of participating in research about their stigma experiences.
Rett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness in RTT was organized.
Jenny Helen Kingsley Downs Leonard Wong BApplSci (physio) MSc PhD MBChB MPH MBBS, MPH, MMedStat Head, Child Disability Principal Research Fellow
Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets.
Researchers have developed Australia’s first comprehensive guidelines for clinical and community services supporting LGBTQA+ youth.