Article
A survey: Understanding the health and perspectives of people with CF not benefiting from CFTR modulators.
Pediatric pulmonology - 1 May 2022
Kramer-Golinkoff Emily, Camacho Amanda, Kramer Liza, Taylor-Cousar Jennifer L
Abstract excerpt
BACKGROUND: While the advent of cystic fibrosis transmembrane conductance regulator (CFTR) modulator use has improved daily life and long-term prognosis of CF for many with approved CFTR mutations, approximately 10% of people with CF (pwCF) have only symptomatic treatments available. METHODS: Between June 10 and July 1, 2021, Emily's Entourage distributed a 38-question anonymous survey targeted at pwCF not...
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