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Showing results for "rett"
Research
Birth seasonality and risk of autism spectrum disorderIn the first multinational study of birth seasonality of autism spectrum disorder, there was evidence supporting the presence of seasonal trends in Finland and Sweden
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Association of Genetic and Environmental Factors with Autism in a 5-Country CohortBased on population data from 5 countries, the heritability of ASD was estimated to be approximately 80%
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Association between interpregnancy interval and adverse birth outcomes in women with a previous stillbirth: an international cohort studyConception within 12 months of a stillbirth was common and was not associated with increased risk of adverse outcomes in the subsequent pregnancy
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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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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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Hospitalizations from Birth to 28 Years in a Population Cohort of Individuals Born with Five Rare Craniofacial Anomalies in Western AustraliaTo describe trends, age-specific patterns, and factors influencing hospitalizations for 5 rare craniofacial anomalies.
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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.
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What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual DisabilityAppropriate support for the health of children with an intellectual disability by parents and healthcare professionals is pivotal, given the high risk of chronic conditions. However, there is limited research that has collected important insights from parents on their learnings for supporting their child's evolving healthcare needs.
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Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiencesPeople living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.