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Research

Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences

People 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.

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Physiological responses to exercise in survivors of preterm birth: a meta-analysis

Survivors of preterm birth (<37 weeks' gestation) have low peak oxygen uptake, a global measure of aerobic fitness and an established predictor of increased morbidity and mortality. However, little is known about other cardiopulmonary outcome measures in this population. We addressed the hypothesis that preterm birth is associated with abnormal respiratory, cardiovascular and metabolic responses to exercise, as assessed by cardiopulmonary exercise testing, via a systematic review and meta-analysis.

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Development of an International Database for a Rare Genetic Disorder: The MECP2 Duplication Database (MDBase)

The natural history of MECP2 duplication syndrome (MDS), a rare X-linked neurodevelopmental disorder with an estimated birth prevalence of 1/150,000 live births, is poorly understood due to a lack of clinical data collected for research. Such information is critical to the understanding of disease progression, therapeutic endpoints and outcome measures for clinical trials, as well as the development of therapies and orphan products.

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Technical standards for respiratory oscillometry

The aim of the task force was to provide technical recommendations regarding oscillometry measurement

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Bullying and psychosocial adjustment among children with and without asthma

Children with asthma face serious mental health risk, but the pathways remain unclear. This study aimed to examine bullying victimisation and perpetration in children with asthma and a comparison sample without a chronic health condition, and the role of bullying in moderating psychosocial adjustment outcomes for those with asthma. A sample of children with and without asthma, and their parents, were recruited from hospital clinics.

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The Global Lung Function Initiative (GLI) Network ERS Clinical Research Collaboration: how international collaboration can shape clinical practice

The Global Lung Function Initiative is working to improve the interpretation of lung function: an update on current work and the opportunities for further engagement

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Selection of appropriate spirometry reference values in Aboriginal Australians

The Global Lung Function ‘Caucasian’ and ‘Other’ spirometry equations do not match healthy Aboriginal FEV1 and FVC data

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Could home-based FeNO measurements breathe new life into asthma management?

Developing a FeNO test that is affordable enough to allow daily measurements, patients will be able to access quantifiable data to assist them to monitor their asthma

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Maternal exposure to indoor air pollution and birth outcomes

Although formaldehyde concentrations were very low, this finding is consistent with other studies of formaldehyde and poor birth outcomes

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The effect of 100% oxygen on tidal breathing parameters in preschool children

This study aimed to determine whether breathing 100% oxygen altered tidal breathing parameters in healthy young children and young children with CF.