Our latest must-read developments
Stay informed. Empower yourself. |
From new studies to emerging treatments and health resources, we give you the information and tools to take charge of your health.
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We are investing up to $11 million in 4D Molecular Therapeutics (4DMT) to continue testing its inhaled gene therapy in people with cystic fibrosis in a Phase 1/2 trial. Gene therapy is a potential treatment that could help all people with cystic fibrosis, regardless of their mutation.
Read more about this investment >>
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Research into infections continues to be a top priority for the Foundation, which is why we are funding clinical trials that seek to improve current treatments for pulmonary exacerbations — a sudden worsening of symptoms in the lungs. The following trials are enrolling people with CF:
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The STOP 360 trial aims to standardize treatment for exacerbations in people with CF ages 6 and older who need to be treated with IV antibiotics. The study will compare the improvement of lung function and symptoms
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The STOP PEDS trial will evaluate the safety and effectiveness of two antibiotic treatment approaches for exacerbations in children with CF ages 3 to 18. One treatment arm will receive 14 days of oral antibiotics right away, while another will receive tailored treatment. Those in the tailored treatment arm will begin antibiotics only if their symptoms worsen or do not improve. Participants in both groups will increase their airway clearance. An initial study to test feasibility showed that 70% of participants were able to prevent the use of oral antibiotics.
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PATIENT REGISTRY RESEARCH
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If you’re one of the 80% of the U.S. CF population who participates in the CF Foundation Patient Registry each year, your data is powering important research about CF. Since 2010, 300+ studies have been published using Patient Registry data, including 15 in the past year. Here are some recent study findings:
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Tobacco smoke exposure significantly decreases the long-term benefits of Trikafta. Avoiding smoke exposure is critical.
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People with CF age 40 and older are more likely to be female; more likely to be diagnosed later in life; and have a higher rate of aging-related complications, such as high blood pressure and bone disease. Individualized care to support the aging CF population is needed.
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CF-related diabetes is more common and develops earlier among Black and Hispanic people with CF. Targeted screenings and interventions may help.
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ADVANCED LUNG DISEASE AND TRANSPLANT
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People who are considering a lung transplant or are maintaining their health post-transplant can use a resource to look up important information about transplant centers, including how many transplants each center has performed in the past six years.
See data about lung transplant centers >>
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New Resources Are Available
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Study Will Monitor Mental Health, Livers of Those Taking Alyftrek
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We are supporting RETRIAL, an observational study currently enrolling participants that will monitor the mental health and liver function of people with CF who discontinued the modulator Trikafta and started taking Alyftrek.
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National Annual Meeting: You are invited to our National Annual Meeting being held virtually on Wednesday, Jan. 14 at 8 p.m. ET / 5 p.m. PT. Join CF Foundation leaders as we share our new Five-Year Strategic Plan, which will guide our work to accelerate progress toward a genetic cure for CF, advance personalized care, and support and engage our community.
Register for the National Annual Meeting >>
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Missed NACFC? Watch sessions on YouTube or catch the Highlights Webinar recording where two CF researchers discussed the top research and care news from the conference and answered audience questions.
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Stay connected with the CF Foundation via our social media channels or visit cff.org/news for the latest updates.
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Have a question or topic you’d like us to explore in a future issue? Email us at [email protected] — we’d love to hear from you.
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