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Age-based pegaspargase dosing is safe and achieves therapeutic levels in infants with ALL: report from COG AALL15P1

Rishi S. Kotecha MB ChB (Hons) MRCPCH FRACP PhD Co-Head, Leukaemia Translational Research rishi.kotecha@health.wa.gov.au Co-Head, Leukaemia

Trajectories of prematurity-associated lung disease: lifelong lung health

Preterm birth is increasingly recognised as adversely influencing lifelong lung function. This Series paper on prematurity-associated lung disease reviews studies reporting longitudinal lung function measurements in individuals who were born preterm. Evidence suggests that preterm birth alters lung function trajectories from early life onwards, with implications for future respiratory morbidity. We propose that this population needs rigorous follow up that should include systematic monitoring of lung function across the lifespan, starting in childhood.

Hot weather, maternal health, and pregnancy experiences, impacts and responses: A systematic review of global qualitative research

Extreme heat exposure is a major global public health threat that is affecting people across the life course, including the pregnancy period. Studies have linked extreme heat with adverse pregnancy and newborn health outcomes globally.

A qualitative study of genomics in cancer control for Aboriginal and Torres Strait Islander Australians

To describe the perspectives of Aboriginal and Torres Strait Islander peoples and health care workers on genomics in cancer care to inform the National Framework for Genomics in Cancer Control (the Framework).

Functional skills in MECP2 duplication syndrome: developmental dynamics and regression

MECP2 duplication syndrome (MDS) is an ultrarare, X-linked neurodevelopmental disorder that is poorly understood in terms of its natural history and phenotypic variability. There is limited information on how individuals with MDS acquire, retain or lose fundamental functional skills (gross motor, purposeful hand function and communication) - that of which this study aimed to better characterise in the largest case series to date.

Healthcare SAVVI: Exploring health literacy and parents' experiences in supporting the health of children with intellectual disability

Research on the health literacy of parents with children with intellectual disability is limited. Understanding parents' healthcare skills and needs is essential for improving children's health and developing effective support. In this study we aimed to (1) explore the health literacy skills of parents that enabled them to support the health needs of their child with intellectual disability and the factors influencing these skills, and (2) identify opportunities to support parent health literacy.

Wideband Absorbance Among Aboriginal and/or Torres Strait Islander and Non-Aboriginal Children With Suspected Otitis Media Living in an Australian Urban Area

Otitis media (OM) is a significant health concern, particularly among Aboriginal and/or Torres Strait Islander children who experience one of the highest rates of OM globally. This study aimed to evaluate the use and differences of wideband absorbance at ambient pressure (WBA) among urban Aboriginal and/or Torres Strait Islander and non-Aboriginal children with suspected OM based on standard tympanometry.

Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Australia’s top 10 rare disease research priorities: a priority setting partnership

The aim of this study was to identify and prioritise the ten most important unanswered themes in rare disease research in Australia by integrating perspectives of key stakeholders, including people living with rare disease, parents/carers, health professionals, and rare disease community advocates.

Culturally competent care for LGBTIQA+ people experiencing intimate partner violence: A reflexive thematic analysis of healthcare provider perspectives and support needs

Lesbian, Gay, Bisexual, Transgender, Intersex, Queer, Asexual/Aromantic (LGBTIQA+) people and other individuals with diverse sexual orientation, sex and/or gender identity experience intimate partner violence (IPV) at higher rates than non-LGBTIQA+ people but often receive inconsistent culturally competent healthcare, which deters help-seeking.