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Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

A flexible computational pipeline for research analyses of unsolved clinical exome cases

Exome sequencing has enabled molecular diagnoses for rare disease patients but often with initial diagnostic rates of ~25-30%. Here we develop a robust computational pipeline to rank variants for reassessment of unsolved rare disease patients. A comprehensive web-based patient report is generated in which all deleterious variants can be filtered by gene, variant characteristics, OMIM disease and Phenolyzer scores, and all are annotated with an ACMG classification and links to ClinVar.

How you can help your child adapt to home schooling

Many children have transitioned to home schooling as a result of the COVID-19 pandemic – bringing about a big change in routine for kids and the entire family.

Helping WA kids through the state’s snap lockdown

WA’s sudden lockdown has come as a shock to most of us. The Kids Research Institute Australia researcher and psychologist Dr Monique Robinson says parents should keep a close eye on their children who may be feeling anxious or disappointed as a result.

Pathways of Socioeconomic Disadvantage and Peer Bullying in Children and Youth: A Scoping Review

Growing up in socioeconomic disadvantage increases risk of peer bullying at school. Both socioeconomic status and involvement in bullying are predictive of a range of adverse developmental outcomes. However, neither (a) the mechanisms whereby disadvantage increases bullying risk nor (b) the developmental outcomes for which bullying may mediate disadvantage are clear. 

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). 

Aragung buraay: culture, identity and positive futures for Australian children: Dharawal language: aragung = shield for war, protection; buraay = child

Fiona Pete Stanley Azzopardi FAA FASSA MSc MD FFPHM FAFPHM FRACP FRANZCOG HonDSc HonDUniv HonFRACGP HonMD HonFRCPCH HonLLB (honoris causa) PhD, FRACP

Spike in Aboriginal child removals sparks call for urgent action to end cycle of trauma

A study confirming Aboriginal children are now 10 times more likely than non-Aboriginal children to be placed in out-of-home care has prompted researchers to call for urgent action to prevent further intergenerational trauma.

The balance between screen, face and free time

Professor Donna Cross advises parents on keeping your children engaged and amused during the holidays, especially around screen time and cyber safety.

Leading disease modeller appointed inaugural Fiona Stanley Chair of Child Health Research

The Kids Research Institute Australia and The University of Western Australia are proud to announce the appointment of the inaugural Fiona Stanley Chair of Child Health Research, Professor Melissa Penny.