A first-of-its-kind, observational study will allow patients with cystic fibrosis (CF) to use their smartphones to monitor the ways in which Trikafta (elexacaftor/tezacaftor/ivacaftor) affects their daily lives. Sponsored by the Cystic Fibrosis Foundation, the now-enrolling HERO-2 study (NCT04798014) will collect patients’ self-reported feedback for one year…
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The therapeutic benefits of the triple-combination medication Trikafta are mostly due to the effects of elexacaftor, a next-generation corrector of CFTR, the faulty protein in cystic fibrosis (CF), a study has found. These findings suggest that new combinations with elexacaftor may be even more effective than Trikafta. Trikafta,…
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in grants, totaling up…
Treatment with Orkambi (ivacaftor/lumacaftor) led to significant improvements in lung health, particularly related to clearing mucus, among people with cystic fibrosis (CF), according to a real-world study of its use in France. The investigation provided a first high-resolution CT scan-based assessment of the medication’s effectiveness, and results also indicated…
Physical activity, undertaken regularly over the long term, appears to complement other therapies in managing cystic fibrosis (CF), a study in a group of active and non-active patients found. Its results also showed that tumor necrosis factor alpha (TNF-alpha) may serve as a biomarker of inflammation to monitor the…
As part of its Path to a Cure initiative, the Cystic Fibrosis Foundation announced three new awards to fund research projects that seek to advance the treatment of cystic fibrosis (CF). The largest award, of up to $2.6 million, was given to Eloxx Pharmaceuticals to aid in the…
The legacy of Mallory Smith, who died nearly four years ago from a cystic fibrosis-related superbug infection in her lungs, is living on in the form of raising awareness and funds for a novel treatment called phage therapy that might have saved her life. Bacteriophages, or simply phages,…
Patients in the U.S. with cystic fibrosis (CF) and advanced lung disease are less likely to receive a lung transplant and twice as likely to die before having transplant surgery than their counterparts in Canada, a new study finds. Moreover, the difference was more pronounced…
Sildenafil improves how muscles work when patients with cystic fibrosis (CF) exercise and this translates into better exercise capacity, a new study suggests. The study, “Exercise intolerance in cystic fibrosis: importance of skeletal muscle,” was published in the journal Medicine & Science in Sports &…
Children in the U.S. with cystic fibrosis (CF) tend to have better lung function than young people with the disease in the U.K., a new study has found, with researchers saying the disparity is likely due to differences in treatment between the two countries. In the U.S., children are more…
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