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Showing results for "rett"

Research

STEPS - Equitable Approach to Early Self-Regulation Promotion

This research aims to co-design the components of a practical and equitable public health approach to promoting mental health in toddlers and young children in Western Australia (WA).

Research

Devising a Missing Data Rule for a Quality of Life Questionnaire - A Simulation Study

The aim of this study was to devise an evidence-based missing data rule for the Quality of Life Inventory-Disability (QI-Disability) questionnaire specifying how many missing items are permissible for domain and total scores to be calculated using simple imputation.

News & Events

2024 Run for a Reason – Team The Kids

The HBF Run for a Reason is back and if you’re looking for a reason to take part in this year’s event, let it be child health research.

Research

Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability

Gastrostomy is increasingly used in multiple neurological conditions associated with intellectual disability, with no apparent accessibility barriers

Research

Lung function testing in preschool-aged children with cystic fibrosis in the clinical setting

This study investigated the nature and prevalence of atypical pain responses in Rett syndrome and their relationships with specific MECP2 mutations.

Research

The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review

Siblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research. 

Research

Impact of biobanks on research outcomes in rare diseases: a systematic review

This review made the important observation that registries with biobanks had the function of both stand-alone registries and stand-alone rare disease biobanks

Research

Maternal mental health and risk of child protection involvement: Mental health diagnoses associated with increased risk

This WA data linkage study aims to assess whether maternal mental health problems are associated with worse child development outcomes, children’s safety and...

Research

Effect of an exercise intervention (Move2Engage: Youth) on activity levels, quality of sleep and mental health outcomes in children and youth with movement difficulties

Melissa Andrew Gail Jenny Videos Licari Whitehouse Watch and listen to Andrew Alvares Downs PhD PhD PhD BApplSci (physio) MSc PhD Senior Research

Equipment to support physical activity

Discover a comprehensive guide on equipment designed to empower physical activity in children with Rett Syndrome, promoting their well-being and development.