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Common data elements to standardize genomics studies in cerebral palsy

To define clinical common data elements (CDEs) and a mandatory minimum data set (MDS) for genomic studies of cerebral palsy (CP). Method: Candidate data elements were collated following a review of the literature and existing CDEs.

Primum non nocere (“first do no harm”) with oxygen therapy

Britta Regli-von Ungern-Sternberg AM FAHMS MD, PhD, DEAA, FANZA Chair of Paediatric anaesthesia, University of Western Australia; Consultant

Modifiable child and caregiver factors that influence community participation among children with Down syndrome

To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome.

Research priorities for paediatric peri-operative medicine identified by Australian children and young people

Parents and caregivers play a critical role in the care of their child peri-operatively. Our team undertook previous research with parents/carers, which identified Australian parents' top 10 research priorities for paediatric anaesthesia and peri-operative medicine. 

Child protection involvement of children of mothers with intellectual disability

Children born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research.

ASCIA Guideline: Infant Feeding for Food Allergy Prevention

The Australasian Society of Clinical Immunology and Allergy (ASCIA) Guideline: Infant Feeding for Food Allergy Prevention is an update of the 2016 ASCIA guideline. This updated guideline provides recommendations specifically in relation to infant feeding for food allergy prevention. 

A brief history of MECP2 duplication syndrome: 20-years of clinical understanding

MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder caused by a duplication of the methyl-CpG-binding protein 2 (MECP2) gene-a gene in which loss-of-function mutations lead to Rett syndrome (RTT). MDS has an estimated live birth prevalence in males of 1/150,000.

Reframing and clarifying melatonin use in paediatric sleep care

Behavioural sleep problems are common in children. The challenges with establishing and maintaining good sleep hygiene may prove challenging to overcome based on environmental issues such as the liberal availability of electronic media from a young age, permissive parenting, difficult family dynamics and limited parental/carer understanding of a child's sleep needs as they progress through childhood and adolescence.

Medical Comorbidities in MECP2 Duplication Syndrome: Results from the International MECP2 Duplication Database

Since the discovery of MECP2 duplication syndrome (MDS) in 1999, efforts to characterise this disorder have been limited by a lack of large datasets, with small case series often favouring the reporting of certain conditions over others. This study is the largest to date, featuring 134 males and 20 females, ascertained from the international MECP2 Duplication Database (MDBase).

Improving Outcome Reporting in Paediatric Airway Management in Clinical Trials (IMPACT): A Study Protocol for Core Outcomes and Clinical Endpoints

Although clinical trials are fundamental to advancing evidence-based practice, significant heterogeneity in outcome reporting poses a considerable challenge to the validity of systematic reviews. This inconsistency impedes the ability to compare, synthesise and interpret research findings effectively. In the field of paediatric airway management, this issue is particularly relevant because of the low incidence of critical events and the related high morbidity and mortality. The issue of inadequate and variable outcome reporting in clinical trials has been widely acknowledged, necessitating initiatives to enhance the quality of future research.

Gastrostomy feeding in children with severe cerebral palsy in Western Australia

Citation: Marpole R, Langdon K, Wilson A. Gastrostomy feeding in children with severe cerebral palsy in Western Australia. Acta Paediatr Int J

Numerical simulation of aerosolised medicine delivery through tracheostomy airways

The administration of inhaled antibiotics to patients with upper or lower respiratory infections is sometimes conducted via a tracheostomy airway. However, precise dosing via this route remains uncertain, especially in spontaneously breathing paediatric patients. 

What is it like living with X-linked hypophosphatemia?: results from an Australian consumer survey

X-linked hypophosphatemia (XLH) is a rare, X-linked dominant condition with a high burden of both physical and psychosocial disease. This study aimed to describe the experience and burden of disease for children and adults living with XLH in Australia by inviting affected individuals and their carers to complete an online questionnaire. Of the 46 responses, half were completed by a person with XLH, and half by carers. Thirty percent were male, 33% were aged less than 18 yr.

Inhaled nebulised adrenaline delivery in children and adults: A simulation study

Sometimes, there is an urgent need to administer inhaled adrenaline to children, awake, sedated or anaesthetised to treat asthma, bronchospasm, croup, and suspected laryngeal/pharyngeal oedema or stridor, which can become severe or even life-threatening. To better inform emergency dosing and administration guidelines, we aimed to quantify the amount of adrenaline delivered for inhalation from a nebuliser, in a simulated experimental delivery set-up for spontaneously breathing children and adults, either via an anaesthetic face mask, a Laryngeal Mask Airway or an Endotracheal tube.

Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder

CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.

2025 ESAIC and ESPA Guidelines on neuromuscular block in anaesthetised children: Indications, monitoring and reversal

Britta Regli-von Ungern-Sternberg AM FAHMS MD, PhD, DEAA, FANZA Chair of Paediatric anaesthesia, University of Western Australia; Consultant

Confident and Trustworthy Model for Fidgety Movement Classification

General movements (GMs) are part of the spontaneous movement repertoire and are present from early fetal life onwards up to age five months. GMs are connected to infants' neurological development and can be qualitatively assessed via the General Movement Assessment. In particular, between the age of three to five months, typically developing infants produce fidgety movements and their absence provides strong evidence for the presence of cerebral palsy.

Using head-mounted augmented and virtual reality devices for anaesthesia education: a scoping review

Head-mounted devices (HMDs) have been explored in anaesthesia education for their unique ability to have head-tracked immersive simulations adaptable to diverse clinical scenarios. This scoping review examines how HMD-based augmented or virtual reality enhances anaesthetic skill learning in clinicians, trainees, and students.

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.