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Research

Ethics and equity in rare disease research and healthcare

Rapid 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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Progress towards a coordinated, national paediatric antimicrobial resistance surveillance programme

These data support that children are not just 'little adults' in the AMR era, and analyses by age group are important to detect differences in antibiotic susceptibility

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A role for early oral exposure to house dust mite allergens through breast milk in IgE-mediated food allergy susceptibility

This study highlights an unpredicted potential risk factor for the development of food allergy, that is, D pteronyssinus allergens in breast milk

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Developing a smartphone application to support social connectedness and wellbeing in young people with cystic fibrosis

This study developed and tested a highly usable, and moderately acceptable, smartphone app to improve the psychosocial health of young people living with CF

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Does otitis media in early childhood affect later behavioural development? Results from the Western Australian Pregnancy Cohort (Raine) Study

The relationship between early life episodes of otitis media and later behavioural development with adjustment for confounders.

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Evidence of functional cell-mediated immune responses to nontypeable Haemophilus influenzae in otitis-prone children

These data provide evidence that otitis-prone children do not have impaired functional cell mediated immunity

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Development of an opsonophagocytic killing assay for Group A Streptococcus

Group A Streptococcus (GAS) or Streptococcus pyogenes is responsible for an estimated 500,000 deaths worldwide each year.

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Paediatric antimicrobial stewardship and safe prescribing: An assessment of medical staff knowledge and behaviour

Participants demonstrated a good understanding of safe prescribing and antimicrobial stewardship