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Ethics and equity in rare disease research and healthcareRapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing.
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Unpacking the application of Q methodology for use in occupational therapy researchOccupational therapy research has not fully utilized available research methods when exploring occupational therapists' views on specific interventions and service provision nor when exploring consumer priorities and the impact of occupational therapy services. Q methodology, a quantitative method for the systematic assessment of qualitative data, is an approach that can be used to examine viewpoints related to occupational therapy.
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Early surveillance of infants and preschool children with cystic fibrosisSensitive and non-invasive surveillance tools are needed for the clinical management of infants and preschool children with cystic fibrosis (CF). The lung clearance index from the multiple breath washout and functional and morphological outcomes from magnetic resonance imaging provide promising alternatives to current gold standard techniques. Early detection and treatment of lung disease during this important period offers the opportunity to improve the quality of life for individuals with CF.
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Understanding the determinants of stress-induced eating – A qualitative studyThe relationship between stress and food consumption is complex and often characterised by substantial between- and within-person variation. From a theoretical and practical perspective, more research is needed to improve our understanding of the factors that influence this relationship. The aim of this study was to identify those factors, and to derive insight into the nature of their effects on the relationship between stress and food consumption.
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Patterns of combustible and electronic cigarette use during pregnancy and associated pregnancy outcomesAlthough pregnant smokers may perceive electronic cigarettes (e-cigarettes) as safe alternatives to smoking combustible cigarettes, few studies have evaluated perinatal e-cigarette use and its associated health effects. We analyzed data from the Pregnancy Risk Assessment Monitoring System (PRAMS, 2016-2018) for 16,022 women who recently gave birth and reported smoking combustible cigarettes prior to pregnancy.
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Subcutaneous administration of benzathine benzylpenicillin G has favourable pharmacokinetic characteristics for the prevention of rheumatic heart disease compared with intramuscular injectionBenzathine penicillin G has been used as monthly deep intramuscular (IM) injections since the 1950s for secondary prevention of acute rheumatic fever and rheumatic heart disease (RHD). Injection frequency and pain are major programmatic barriers for adherence, prompting calls for development of better long-acting penicillin preparations to prevent RHD.
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Whole-Cell Pertussis Vaccination and Decreased Risk of IgE-Mediated Food Allergy: A Nested Case-Control StudyAustralian infants who received whole-cell pertussis vaccines were less likely to be diagnosed with food allergy in childhood
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Safety of live attenuated herpes zoster vaccine in adults 70–79 years: A self-controlled case series analysis using primary care dataNo new safety concerns were identified for live attenuated herpes zoster vaccine in this study based on a novel, Australian primary care data source
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Retrospective Case-Control Study of 2017 G2P[4] Rotavirus Epidemic in Rural and Remote AustraliaA widespread G2P[4] rotavirus epidemic in rural and remote Australia provided an opportunity to evaluate the performance of Rotarix and RotaTeq rotavirus vaccines, ten years after their incorporation into Australia's National Immunisation Program.
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Adolescent education outcomes and maltreatment: The role of pre-existing adversity, level of child protection involvement, and school attendanceMaltreated children are at high risk for low educational achievement, however few studies have accounted for confounding risk factors that commonly co-occur (including child, family and neighbourhood risk factors) and results have been mixed, particularly for adolescents.