News

CFTR Modulator Adherence High in Kids, Teens on Symdeko, Orkambi

Children and adolescents on Symdeko (tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor) for cystic fibrosis (CF) had higher treatment adherence rates compared with adults given the same CFTR modulators, a nationwide study in the U.S. found. The study also showed that adherence — patients choosing to follow through with a prescribed treatment —…

FDA Approves Trikafta to Treat Children Starting at Age 6

The U.S. Food and Drug Administration (FDA) has approved expanding the use of Trikafta (elexacaftor, tezacaftor, and ivacaftor) to children with cystic fibrosis (CF), ages 6 and older, who have at least one F508del mutation in the CFTR gene or a CFTR mutation that responds to Trikafta in laboratory studies. Use of…

New Cell Research Model Shows Promise Against P. Aeruginosa

A combination of bacteria-infecting viruses and antibiotics can be used to effectively protect lung cells against infection by Pseudomonas aeruginosa, a bacteria that commonly causes lung infections in people with cystic fibrosis (CF), according to a study led by researchers at the University of Geneva (UNIGE). The model…

User-friendly Digital Health Tools Now Available in Canada

The nonprofit Cystic Fibrosis Canada has teamed up with technology company iMD Health Global (iMD) to make user-friendly digital health tools for cystic fibrosis (CF) available to both patients and healthcare professionals. The  goal is to boost understanding of the disease and how to best manage it. Through…

Smartphone App Study to Assess How Trikafta Affects Daily Life

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…

Orkambi Seen on CT Scans to Aid Lung Health, Mucus Clearance

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…

Regular, Sustained Exercise Helps in Managing CF, Study Suggests

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…


Featured Column

How I Discovered That PTSD Was Causing My Post-transplant Struggles

PTSD, mental health, communities, stress, grateful, work, trauma, rare disease day, transplant, CF community, National Blood Donor Month, birthdays, holidays
Columnist Lara Govendo addresses an issue that several readers may relate to: post-transplant PTSD, which can wreak havoc.

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