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Research

Perspectives of trans and gender diverse young people accessing primary care and gender-affirming medical services: Findings from Trans Pathways

Increasing numbers of trans young people are seeking medical services worldwide, but there have been few qualitative investigations of the experiences of trans young people attempting to engage with these services to explore in-depth experiences of clinical interactions.

Research

Ethics and equity in rare disease research and healthcare

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing.

Research

Early surveillance of infants and preschool children with cystic fibrosis

Sensitive and non-invasive surveillance tools are needed for the clinical management of infants and preschool children with cystic fibrosis (CF). The lung clearance index from the multiple breath washout and functional and morphological outcomes from magnetic resonance imaging provide promising alternatives to current gold standard techniques. Early detection and treatment of lung disease during this important period offers the opportunity to improve the quality of life for individuals with CF.

Research

Parents' Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective

COVID-19 has had far-reaching impacts including changes in work, travel, social structures, education, and healthcare. This study aimed to explore the experiences of parents of children receiving treatment for cancer during the COVID-19 pandemic.

Research

Use of administrative record linkage to examine patterns of universal early childhood health and education service use from birth to Kindergarten (age 4 years) and developmental vulnerability in the Preparatory Year (age 5 years) in Tasmania, Australia

In Australia, the health and education sectors provide universal early childhood services for the same population of children. Therefore, there is a strong imperative to view service use and outcomes through a cross-sectoral lens to better understand and address the service needs of young children and their families.

Research

Parental Perspectives on Children’s School Readiness: An Ethnographic Study

School readiness is a construct used by educators and policy makers to describe a range of abilities that are beneficial for children transitioning to school. The association of socioeconomic disadvantage with developmental vulnerability when children start school is well established. Parents play a crucial role in supporting children’s transition to school and are acknowledged as their child’s first and foremost teacher.

Research

Twenty years of integrated disease surveillance and response in Sub-Saharan Africa: challenges and opportunities for effective management of infectious disease epidemics

This systematic review aimed to analyse the performance of the Integrated Disease Surveillance and Response strategy in Sub-Saharan Africa and how its implementation has embraced advancement in information technology, big data analytics techniques and wealth of data sources.

Research

Antimicrobial susceptibility testing profiles of ESBL-producing Enterobacterales isolated from hospital and community adult patients in Blantyre, Malawi

There is a paucity of data on antimicrobial resistance (AMR) in Malawi. Here we present a study of AMR of extended-spectrum β-lactamases-producing Enterobacterales (ESBL-E) isolated from hospital and community settings in Blantyre, Malawi.

Research

International links between Streptococcus pneumoniae vaccine serotype 4 sequence type (ST) 801 in Northern European shipyard outbreaks of invasive pneumococcal disease

Pneumococcal disease outbreaks of vaccine preventable serotype 4 sequence type (ST)801 in shipyards have been reported in several countries. We aimed to use genomics to establish any international links between them.

Research

Personal network inference unveils heterogeneous immune response patterns to viral infection in children with acute wheezing

Human rhinovirus (RV)-induced exacerbations of asthma and wheeze are a major cause of emergency room presentations and hospital admissions among children. Previous studies have shown that immune response patterns during these exacerbations are heterogeneous and are characterized by the presence or absence of robust interferon responses.