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<p>Cystic fibrosis (CF) is one of the most common rare, genetic diseases. Newly available, highly effective modulator therapy (HEMT) improves many domains of CF pathophysiology. Thereby, HEMT challenges current standards of care and prediction models of disease outcomes.</p><p>We established a&#xa0;public patient involvement (PPI) group including experts and caregivers of children with CF and collated a&#xa0;narrative review on CF management. This review is based on the views of healthcare professionals and caregivers and summarizes important features of the disease, prevention and treatment which are currently considered relevant for caregivers and Austrian healthcare settings.</p>

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Cystic fibrosis care today—a narrative review based on views of experts, patients and the public

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年4月8日

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  • Florian Singer,
  • Anja Maria Schaffer,
  • Michaela Auer,
  • Jakob Auer,
  • Jasmin Pansy,
  • Vanessa Stadlbauer,
  • Ernst Eber

摘要

Cystic fibrosis (CF) is one of the most common rare, genetic diseases. Newly available, highly effective modulator therapy (HEMT) improves many domains of CF pathophysiology. Thereby, HEMT challenges current standards of care and prediction models of disease outcomes.

We established a public patient involvement (PPI) group including experts and caregivers of children with CF and collated a narrative review on CF management. This review is based on the views of healthcare professionals and caregivers and summarizes important features of the disease, prevention and treatment which are currently considered relevant for caregivers and Austrian healthcare settings.