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Autor
Addy, Charlotte 1 Bell, Scott C 1 Bertrand, Dominique Pougheon 1 Bevan, Amanda 1 Borawska, Urzula 1 Brown, Catherine 1 Burgel, Pierre-Régis 1 Button, Brenda 1 Castellani, Carlo 1 Chansard, Audrey 1 Chilvers, Mark A 1 Davies, Gwyneth 1 Davies, Jane C 1 De Boeck, Kris 1 Declercq, Dimitri 1 Doumit, Michael 1 Drevinek, Pavel 1 Fajac, Isabelle 1 Gartner, Silvia 1 Georgiopoulos, Anna M 1
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Pracoviště
All Wales Adult Cystic Fibrosis Centr... 1 Assistance Publique Hôpitaux de Paris... 1 CF Center Cologne Children ́s Hospita... 1 CF Patient Head of Access Off label a... 1 Copenhagen CF center Rigshospitalet C... 1 Cork Centre for Cystic Fibrosis Cork ... 1 Cystic Fibrosis Centre Pediatric Hosp... 1 Cystic Fibrosis Department Institute ... 1 Cystic Fibrosis Europe Brussels Belgi... 1 Cystic Fibrosis Reference Center Depa... 1 Department of Clinical Pharmacy and P... 1 Department of Internal Medicine and P... 1 Department of Medical Microbiology 2n... 1 Department of Medicine Nursing and He... 1 Department of Nutrition and Dietetics... 1 Department of Paediatric Respiratory ... 1 Department of Pathophysiology and Tra... 1 Department of Pediatrics Center for c... 1 Department of Psychiatry Massachusett... 1 Department of Respiratory Medicine Th... 1
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Autor
Addy, Charlotte 1 Bell, Scott C 1 Bertrand, Dominique Pougheon 1 Bevan, Amanda 1 Borawska, Urzula 1 Brown, Catherine 1 Burgel, Pierre-Régis 1 Button, Brenda 1 Castellani, Carlo 1 Chansard, Audrey 1 Chilvers, Mark A 1 Davies, Gwyneth 1 Davies, Jane C 1 De Boeck, Kris 1 Declercq, Dimitri 1 Doumit, Michael 1 Drevinek, Pavel 1 Fajac, Isabelle 1 Gartner, Silvia 1 Georgiopoulos, Anna M 1
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Pracoviště
All Wales Adult Cystic Fibrosis Centr... 1 Assistance Publique Hôpitaux de Paris... 1 CF Center Cologne Children ́s Hospita... 1 CF Patient Head of Access Off label a... 1 Copenhagen CF center Rigshospitalet C... 1 Cork Centre for Cystic Fibrosis Cork ... 1 Cystic Fibrosis Centre Pediatric Hosp... 1 Cystic Fibrosis Department Institute ... 1 Cystic Fibrosis Europe Brussels Belgi... 1 Cystic Fibrosis Reference Center Depa... 1 Department of Clinical Pharmacy and P... 1 Department of Internal Medicine and P... 1 Department of Medical Microbiology 2n... 1 Department of Medicine Nursing and He... 1 Department of Nutrition and Dietetics... 1 Department of Paediatric Respiratory ... 1 Department of Pathophysiology and Tra... 1 Department of Pediatrics Center for c... 1 Department of Psychiatry Massachusett... 1 Department of Respiratory Medicine Th... 1
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This is the second in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on establishing and maintaining health. The guidance is produced using an evidence-based framework and with wide stakeholder engagement, including people from the CF community. Authors provided a narrative description of their topic and statements, which were more directive. These statements were reviewed by a Delphi exercise, achieving good levels of agreement from a wide group for all statements. This guidance reinforces the importance of a multi-disciplinary CF team, but also describes developing models of care including virtual consultations. The framework for health is reinforced, including the need for a physically active lifestyle and the strict avoidance of all recreational inhalations, including e-cigarettes. Progress with cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy is reviewed, including emerging adverse events and advice for dose reduction and interruption. This paper contains guidance that is pertinent to all people with CF regardless of age and eligibility for and access to modulator therapy.
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