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Helping kids be kids

Discover the stories of children whose lives have been impacted by Telethon Kids Institute research.

Comparing Web-Based Mindfulness With Loving-Kindness and Compassion Training for Promoting Well-Being in Pregnancy: Protocol for a Three-Arm Pilot Randomized Controlled Trial

Promoting psychological well-being and preventing distress among pregnant women is an important public health goal. In addition to adversely impacting the mother's health and well-being, psychological distress in pregnancy increases the risk of poor pregnancy outcomes, compromises infant socioemotional development and bonding, and heightens maternal and child vulnerability in the postpartum period. Mindfulness and compassion-based interventions show potential for prevention and early intervention for perinatal distress.

Wellbeing study

Burns are a common cause of emergency presentations, and most burn injuries happen to children and adolescents.

Comparing home polysomnography with transcutaneous CO2 monitoring to laboratory polysomnography in children with neuromuscular disorders

Clinical utility of home polysomnography in children with neuromuscular disorders is limited by lack of evidence that sleep-disordered breathing can be reliably identified and inability to diagnose hypoventilation because carbon dioxide is not measured.

Real-world benefits and tolerability of trofinetide for the treatment of Rett syndrome: The LOTUS study

Aim: To describe the real-world effects of trofinetide in individuals with Rett syndrome (RTT) using the 18-month follow-up analysis of the LOTUS study.

Longitudinal associations between maternal and child screen use at 1 year of age and child behavior and development at 3 years of age

Young children are increasingly exposed to evolving screen technology. International guidelines recommend no screen use for children under the age of 2 years, due to the potential for detrimental effects on behaviour and development. However, evidence for these guidelines is limited by inadequate consideration of device-specific effects (TV and mobile phone/tablet computer), maternal screen use, confounders such as maternal mental health and importance of effect sizes.

Coping Compass: co-designing a brief online positive psychology programme for youth with chronic conditions

This article presents a case study of a 12-month co-design process with young people (16–25) living with chronic health conditions to create an online, self-guided intervention based on positive psychology. Following an established framework for co-designing with vulnerable consumers, the co-design process was designed with stakeholders to promote accessibility and maximise youth engagement in the design of the programme.

Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness.

Identifying SETBP1 haploinsufficiency molecular pathways to improve patient diagnosis using induced pluripotent stem cells and neural disease modelling

SETBP1 Haploinsufficiency Disorder (SETBD) is characterised by mild to moderate intellectual disability, speech and language impairment, mild motor developmental delay, behavioural issues, hypotonia, mild facial dysmorphisms, and vision impairment. Despite a clear link between SETBP1 mutations and neurodevelopmental disorders the precise role of SETBP1 in neural development remains elusive.

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

Explored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement