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Research

Patient and carer priorities for research and clinical care of children with Down syndrome

Down syndrome, the most common genetic disorder, is caused by the presence of all or part of a third copy of chromosome 21. We identified the top 10 patient and carer research priorities for children with Down syndrome.

Research

Proposed Core Outcomes After Neonatal Sepsis: A Consensus Statement

Sepsis is one of the leading causes of neonatal mortality. There is heterogeneity in the outcomes measured and reported in studies of neonatal sepsis. To address this challenge, a core outcome set (COS) for research on neonatal sepsis was needed.

Research

The Definition of Cerebral Palsy

Cerebral palsy (CP) should not be considered as a diagnosis but as a label; it is an umbrella term, primarily affecting posture and mobility. The definition is not sufficiently precise to guarantee agreement as to which patients to include under this label, but the additional inclusion criteria required are not yet internationally standardised. 

Research

Epidemiology of the Cerebral Palsies

Epidemiology of cerebral palsy (CP) aims to describe the frequency of the condition in a population and to monitor its changes over time, and a guide to the management of patients. Classification of CP is an important step toward describing more homogenous subgroups of persons with CP.

Research

The Truth Of Our Stories: A mixed method evaluation of Elder and community-led cultural training for out-of-home care agency workers and non-Indigenous foster carers in Australia

Globally, Indigenous peoples have incurred significant harm due to colonisation of their lands. Dispossession of culture, language, family and land, and the historical, systematic removal of children in Australia (the ‘Stolen Generation’), has resulted in evident ongoing negative outcomes in the contemporary lives of Aboriginal and Torres Strait Islander people.

Research

Severe adverse reactions to benzathine penicillin G in rheumatic heart disease: A systematic review and meta-analysis

Fear of severe adverse reaction (SAR) and reluctance of health care providers to administer intramuscular injections are major contributing factors to poor adherence of benzathine penicillin G (BPG) in the management of rheumatic heart disease (RHD). However, data on the risk of SARs following BPG injections for RHD are relatively limited and inconclusive. Our systematic review and meta-analysis aimed to evaluate the incidence of SARs associated with BPG injections used for secondary prophylaxis of RHD. 

Research

Designing a paediatric teleotology pilot in the UK: Outcomes from a scoping review of the literature, with insights from the Ear Portal pilot service in Perth, Western Australia

To inform the design of a United Kingdom (UK) paediatric teleotology pilot by analysing global teleotology initiatives and drawing on insights from a successful paediatric teleotology pilot service in Perth, Western Australia (Ear Portal).

Research

Impact of honey on post-tonsillectomy pain in children (BEE PAIN FREE Trial): a multicentre, double-blind, randomised controlled trial*

Tonsillectomy, a common childhood surgery, is associated with difficult postoperative recovery. Previous reviews provided low-grade evidence that honey may improve recovery. The BEE PAIN FREE study investigated whether honey alongside multimodal analgesia improved the recovery trajectory in children following tonsillectomy.

Research

Single-cell data combined with phenotypes improves variant interpretation

Whole genome sequencing offers significant potential to improve the diagnosis and treatment of rare diseases by enabling the identification of thousands of rare, potentially pathogenic variants. Existing variant prioritisation tools can be complemented by approaches that incorporate phenotype specificity and provide contextual biological information, such as tissue or cell-type specificity. 

Research

Norm Misperception and Witnessing Bullying: The Role of Individual and Contextual Characteristics

Previous studies have shown that when young people witness bullying, perceived social norms of their peer group affect their behavior. However, few studies have examined the specificity of norm misperception (i.e., overestimation of peer antisocial responses and the underestimation of prosocial responses relative to the objective group norm) on specific witness responses (joining in, bystanding or active defending).