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IDH-mutant gliomas in children and adolescents - from biology to clinical trials

Gliomas account for nearly 30% of all primary central nervous system (CNS) tumors in children and adolescents and young adults (AYA), contributing to significant morbidity and mortality. The updated molecular classification of gliomas defines molecularly diverse subtypes with a spectrum of tumors associated with age-distinct incidence.

The need for community-controlled tools to monitor health impacts of housing and living conditions in Australia

We explore the contemporary landscape of housing investments and initiatives seeking to improve health outcomes among Aboriginal and Torres Strait Islander people in Australia, as well as the dearth of quality evidence and agreed approaches to evaluation.

Improving sport opportunities, participation, and experiences for children in out-of-home care: A mixed-methods study

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.

Returning raw genomic data to research participants in a pediatric cancer precision medicine trial

In pediatric cancer precision medicine clinical trials settings, parents proactively seeking treatment and answers to causation may request return of their child's raw data and/or biospecimen. To satisfy such requests, the ZERO Childhood Cancer Program required a guidance document.

Subnational tailoring of malaria interventions to prioritize the malaria response in Guinea

In the context of high malaria burden yet limited resources, Guinea's national malaria programme adopted an innovative subnational tailoring approach, including engagement of stakeholders, data review, and data analytics, to update their malaria operational plan for 2024-2026 and identify the most appropriate interventions for each district considering the resources available.

Catalysing change in health and medical research policy: an Australian case study of deliberative democracy to reform sex and gender policy recommendations

Revising public health policy based on new data does not happen automatically. This is acutely relevant to the now undeniable evidence that many diseases develop differently between the sexes and may also be affected by gender. Current health and medical practices across the globe generally fail to cater for sex and gender effects in common diseases. 

X-Linked Hypophosphataemia and Burosumab: A Systemic Disease With a New Treatment

X linked hypophosphataemia (XLH) is a systemic, chronic condition that significantly impairs quality of life. In XLH, a phosphate regulating endopeptidase homologue X-linked (PHEX) gene mutation leads to excess fibroblast growth factor 23 (FGF23), causing hypophosphataemia and subsequent rickets, lower limb deformity, pain and other sequelae, however there are likely other non-FGF23 mediated mechanisms contributing to disease

Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis

No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.

Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives

Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome.