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Critical mass in rare diseases - an innovative internet approachThe internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.
Research
Investigating the relationships between sun exposure and cardiometabolic dysfunctionPeter Shelley Jacoby Gorman BA (Hons) MSc BSc (Hons) PhD Biostatistician Honorary Research Associate Peter.Jacoby@thekids.org.au shelley.gorman@
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A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical CareChildren with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.
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The impact a Mediterranean Diet in the third trimester of pregnancy has on neonatal body fat percentageMaternal diet during pregnancy has long been recognised as an important determinant of neonatal outcomes and child development. Infant body composition is a potentially modifiable risk factor for predicting future health and metabolic disease.
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Prevalence of electronic device use before bed among Australian children and adolescents: a cross-sectional population level studyTo understand the prevalence of children and adolescents’ electronic device use (EDU) in the hour before bed and identify sociodemographic groups that are at increased risk of problematic use.
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“Coronavirus Changed the Rules on Everything”: Parent Perspectives on How the COVID‐19 Pandemic Influenced Family Routines, Relationships and Technology Use in Families with InfantsThis study explores how the first wave of the COVID‐19 pandemic influenced family routines, relationships and technology use (smartphones and tablet computers) among families with infants. Infancy is known to be an important period for attachment security and future child development, and a time of being susceptible to changes within and outside of the family unit.
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Incidence and associated risk factors for falls in adults with intellectual disabilityPeople with intellectual disability fall at a younger age compared with the broader community
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Incidence and prevalence of falls in adults with intellectual disability living in the community: a systematic reviewSynthesized findings demonstrate that people with intellectual disability, who live in community or residential settings, may fall more frequently, and at a younger age
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Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods designTo investigate how caregivers of children with developmental and epileptic encephalopathy and severe developmental impairments describe meaningful change for functional domains and why it is important.
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Factors influencing participation in home, school, and community settings by 6- to 9-year-old children born preterm: a qualitative descriptive studyThere is no published information on preterm children's activities and participation during middle childhood, a time when growth and development are characterised by increasing motor, reasoning, self-regulation, social and executive functioning skills. This study explored the health, activities and participation of children born very preterm during middle childhood (6-9 years) from the perspectives of their parents.