Our latest must-read developments


# November/December Update


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# 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.



GENETIC THERAPIES

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 >> ([link removed])




INFECTION RESEARCH

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:

* The
STOP 360 trial ([link removed])
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
* The
STOP PEDS trial ([link removed])
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 ([link removed])
([link removed])showed that 70% of participants were able to prevent the use of oral antibiotics.



Find other anti-infective trials that are enrolling >> ([link removed])




PATIENT REGISTRY RESEARCH

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:

*
Tobacco smoke exposure ([link removed])
significantly decreases the long-term benefits of Trikafta. Avoiding smoke exposure is critical.
*
People with CF age 40 and older ([link removed])
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.
*
CF-related diabetes ([link removed])
is more common and develops earlier among Black and Hispanic people with CF. Targeted screenings and interventions may help.



Learn more about the Patient Registry >> ([link removed])




ADVANCED LUNG DISEASE AND TRANSPLANT

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 >> ([link removed])




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MENTAL HEALTH

New Resources Are Available

*
A new handout from the CF Foundation Mental Health Advisory Committee ([link removed])
presents the many possible reasons for mental health changes when taking modulators and how people with CF can partner with their care team to address concerns
*
A handout for young adults ([link removed])
with CF discusses asking for accommodations at college or vocational programs, self-care and healthy coping strategies, and where to turn for help with mental health needs
*
A handout for families of school-aged children ([link removed])
with CF reviews mental health support services at school, school plans, and the importance of self-care for the whole family



Study Will Monitor Mental Health, Livers of Those Taking Alyftrek

We are supporting
RETRIAL ([link removed]), an observational study currently enrolling participants that will monitor the mental health and liver function of people with CF who discontinued the
modulator ([link removed])
Trikafta and started taking Alyftrek.



GET INVOLVED

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 >> ([link removed])


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.

*
Watch NACFC recordings on YouTube >> ([link removed])

*
Watch the NACFC Highlights Webinar >> ([link removed])





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Stay connected with the CF Foundation via our social media channels or visit
cff.org/news ([link removed])
for the latest updates.



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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