Sydney Children's Hospital

Paediatric haematopoietic stem cell transplantation research priorities: Results from an international multi‐stakeholder priority setting partnership

Summary Co‐designed research in paediatric HSCT is limited. We sought to determine research priorities which represent the shared priorities of patients, parents, carers and healthcare professionals (HCP) within Australia, New Zealand, the Netherlands and the United Kingdom. An i...

Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts

Abstract Background The meaningful integration of lived experience expertise into cancer research is increasingly recognized as essential to improving research relevance, quality, and impact. However, the extent to which people with lived experience of cancer hold leadership role...

Sodium butyrate rescues long-term neurodevelopmental deficits following perinatal methadone exposure

Abstract Background Prenatal opioid exposure (POE) induces long-term neurodevelopmental, behavioral and cognitive deficits for which no targeted treatments are available. The mechanisms underlying POE deficits are poorly understood, but have been linked to a range of central, per...

Beyond Knowledge Transfer: Caregivers’ Evolving Medication Information Needs Across Paediatric Oncology Treatment

AIM: To identify and describe the medication information needs and preferences of caregivers of children with cancer, and the factors that support or impede those needs being met. DESIGN: Qualitative descriptive study guided by reflexive thematic analysis. METHODS: Between Novemb...

Following the rules: which type 1 diabetes guidelines, protocols and recommendations are tertiary clinics in Australia following? A quantitative study

OBJECTIVES: This study characterises the use of type 1 diabetes (T1D) guidelines and protocols in Australian T1D clinics working with paediatric patients, and determines if management practices align with T1D-specific guidelines. METHODS: T1D clinic service leaders responded to a...

Optimizing Informed Consent for Australian Newborn Bloodspot Screening and Research: Consensus Workshop Insights and Recommendations

Informed consent is fundamental to Australian newborn bloodspot screening (NBS), but emerging genomic screening technologies pose new challenges to clinical care and research. Optimizing consent processes is necessary to support ethical practice and maintain public trust as NBS e...

International healthcare professionals’ competence in caring for LGBTQ+ children and young people: a combined qualitative and quantitative approach

Objective To evaluate healthcare professionals’ attitudes, knowledge and clinical preparedness in caring for lesbian, gay, bisexual, transgender, queer/questioning; the + denoting inclusion of all identities (LGBTQ+) children and young people across international healthcare setti...