Skip to content

Search

Caregiver Perspective of Benefits and Side Effects of Anti-Seizure Medications in CDKL5 Deficiency Disorder from an International Database

CDKL5 deficiency disorder presents as a challenging condition with early-onset refractory seizures, severe developmental delays, and a range of other neurological symptoms. Our study aimed to explore the benefits and side effects of anti-seizure medications in managing seizures among individuals with CDKL5 deficiency disorder, drawing on data from the International CDKL5 Disorder Database.  

Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey

Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities.

Population-level 5-year event-free survival for children with cancer in Australia

Event-free survival considers other adverse events in addition to mortality. It therefore provides a more complete understanding of the effectiveness and consequences of treatment than standard survival measures, but is rarely reported at the population level for childhood cancer.

Per Os to Protection – Targeting the Oral Route to Enhance Immune-mediated Protection from Disease of the Human Newborn

Valerie Verhasselt MD, PhD Head, Immunology and Breastfeeding 0402997617 Valerie.verhasselt@thekids.org.au Head, Immunology and Breastfeeding @

Determining the Optimal Methodology for Identifying Incident Stroke Deaths Using Administrative Datasets Within Australia

Quantifying stroke incidence and mortality is crucial for disease surveillance and health system planning. Administrative data offer a cost-effective alternative to "gold standard" population-based studies. However, the optimal methodology for establishing stroke deaths from administrative data remains unclear.  

Relational processes for transformative climate justice policymaking: insights from a Western Australian community of practice

This article explores how relational approaches to policymaking across multiple levels and sectors of society might enable transformative climate justice. It draws on a unique case study from the state of Western Australia, where climate justice is thwarted by the coloniality of climate politics and the hegemony of the fossil fuel industry.

An Oxygen Supply Is Not Enough: A Qualitative Analysis of a Pressure Swing Adsorption Oxygen Plant Program in Ethiopian Hospitals

In response to critical gaps in medical oxygen access, 2 pressure swing adsorption (PSA) oxygen production centers were established using an ecosystem-strengthening strategy in Amhara, Ethiopia, in 2019. A qualitative study was conducted to assess enablers and bottlenecks to oxygen access at the hospital level after installation. 

Edaravone for the Treatment of Motor Neurone Disease: A Critical Review of Approved and Alternative Formulations against a Proposed Quality Target Product Profile

Edaravone is one of two main drugs for treating motor neurone disease (MND). This review proposes a specific quality target product profile (QTPP) for edaravone following an appraisal of the issues accounting for the poor clinical uptake of the approved IV and oral liquid edaravone formulations. This is followed by a review of the alternative oral formulations of edaravone described in the published patent and journal literature against the QTPP.

Skin health of urban-living Aboriginal children attending a primary care Aboriginal Community Controlled Health Organisation clinic

Despite increasing urbanisation, little is known about skin health for urban-living Aboriginal children and young people (CYP, aged <18 years). This study aimed to investigate the primary care burden and clinical characteristics of skin conditions in this cohort. 

Widening the lens for pandemic preparedness: children must be seen and heard

The Australian and New Zealand Paediatric Infectious Diseases (ANZPID) Group of the Australasian Society for Infectious Diseases (ASID) calls for urgent consideration of the needs and voices of children in response to the COVID-19 pandemic, and in planning for future pandemics.