Reports and Findings (Published Research)

Longitudinal Rett syndrome behaviour questionnaire scores and their associations with genotype and trajectories of mobility, weight and seizure frequency status

The Rett Syndrome Behaviour Questionnaire (RSBQ) describes behavioural and emotional features. This study investigated total RSBQ score trajectories and their clustering, and for trajectory groups, relationships with genotype and mobility, weight-for-age z scores, and seizure frequency.

Implementing Cultural Safety in Research Methodology: The Co-Design Process of a Brief Therapeutic Intervention for Aboriginal and Torres Strait Islander Young People Who Engage in Self-Harm

Aboriginal and Torres Strait Islander Peoples share rich cultural traditions unrivalled across the world; however, the continued impact of colonisation led to sustained, profound trauma that has spanned generations. With Aboriginal and Torres Strait Islander people presenting to hospital emergency departments for self-harm and suicidal behaviours at a rate 2.9 times higher than non-Indigenous people, there is a need to develop culturally appropriate interventions to address this growing problem.

Nutrition in early life interacts with genetic risk to influence preadult behaviour in the Raine Study

Early life nutrition is associated with child behaviour; however, the interplay with genetic vulnerability is understudied. We hypothesised that psychiatric genetic risk interacted with early nutrition to predict behavioural problems in childhood and adolescence.

Co-designing a new clinical pathway to support families with children identified as having early-stage type 1 diabetes in Western Australia

Children with early-stage (pre-symptomatic) type 1 diabetes are currently identified primarily via research-based screening programmes in Australia. Once identified, families live with the knowledge that their child has an increased chance of developing symptomatic, lifelong, insulin-requiring type 1 diabetes but have no specific clinical pathway available to them in Western Australia for accessing tailored support or education. This project aimed to co-design a new clinical pathway to address this unmet need.

Critical Events in Anaesthetised Kids Undergoing Tracheal Intubation (CRICKET)—study protocol for an international multicentre prospective observational study

Critical Events in Anaesthetised Kids undergoing Tracheal Intubation (CRICKET) is a prospective, international multicentre observational study with the objective of capturing, assessing, and analysing critical events associated with tracheal intubation in children.

High rates of suppurative otitis media among children attending urban clinics in Goroka, Eastern Highlands Province, Papua New Guinea: a cross-sectional study

Otitis media (OM) is the leading cause of childhood hearing loss but its burden in low-middle-income countries like Papua New Guinea (PNG) is poorly understood. We aimed to determine the proportion of children aged ≤15 years attending clinics in Goroka, Eastern Highlands Province, PNG with OM and associated risk factors.

Protocol for a feasibility and acceptability trial of Bloom, a co-produced and co-facilitated parent group to enhance the quality of life and well-being of young autistic children

The autistic and autism communities have identified improving the quality of life and well-being of autistic people as a key priority. Despite this, to date, there are no evidence-based supports for autistic children which specifically focus on improvements in these areas.

Advancing CNS tumor diagnostics with expanded DNA methylation-based classification

DNA methylation-based classification is now central to contemporary neuro-oncology, as highlighted by the World Health Organization classification of central nervous system tumors. This expansion is a result of newly identified tumor types discovered through our large online repository and global collaborations, underscoring CNS tumor heterogeneity.

Disordered eating in autistic trans and gender diverse people: a lived experience-led scoping review

This lived experience-led scoping review explores the evidence base related to eating disorders/disordered eating behaviours in Autistic trans and gender diverse (TGD) people. This review highlights the currently available data on eating disorder prevalence rates, comparisons with allistic and cisgender groups, drivers and maintenance factors, the relationship between eating disorders and gender-affirming medical care, and treatment outcomes in this population.

The Costs and Benefits of ‘Passing’: A Systematic Review of the Qualitative Evidence on Passing for Trans Individuals and Communities

Passing is a contentious issue within the trans community. Some trans people strive to pass as cisgender as an inherent goal or to reduce dysphoria, enhance safety, and potentially to facilitate acceptance. Others argue that trans people should not need to pass and that expectations to do so can cause harm to the trans community. This review aimed to systematically source and synthesize the existing qualitative literature that explores the costs and benefits of passing for trans people.