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Research and Care June Updates

# June Update

IN THIS EDITION:

* Several clinical trials are enrolling
* New lung function standards are here
* The results to the Adapting CF Care survey



Learn About Cystic Fibrosis Clinical Trials

Did you know that people with CF can volunteer for clinical trials regardless of their location? Most clinical trials offer
reimbursement for travel and other expenses ([link removed])
for those who meet eligibility criteria. Visit the
Clinical Trial Finder ([link removed])
to browse enrolling trials and use the filters to search by age, CFTR mutation, travel distance, and more. If you have questions about clinical trials, you can reach out to our new clinical trial navigator, Katie Howe, who can provide personalized, one-on-one assistance. You can contact her at [email protected] (mailto:[email protected]) or by
filling out an inquiry form ([link removed]).



New Studies Enrolling

In addition to working with companies to accelerate the next generation of transformative therapies, the Foundation funds a wide range of academic research in CF treatment and care. Several studies are enrolling:

* Infection: The
STOP 360 trial ([link removed])
will compare the improvement of lung function and symptoms in those treated with one IV antibiotic versus one IV antibiotic plus IV tobramycin during an exacerbation. The
ABATE trial ([link removed])
will evaluate IV gallium in people with CF who have nontuberculous mycobacteria infections that don't respond to usual treatment.
* Nutrition: In
STRONG-CF ([link removed]), researchers hope to better understand the overall nutritional status and body composition of the CF population and, potentially, what psychosocial and other medical factors may contribute to poor nutrition in the adult advanced lung disease population. The
EATN trial ([link removed])
is designed to analyze what nutrition means to people with CF, behavioral and psychosocial factors that support or hinder optimal nutrition, and strategies/interventions to improve nutritional status.
* Reproductive Health: The
MAYFLOWERS ([link removed])
study will evaluate changes in lung function and other health outcomes, comparing people with CF who are and are not taking modulators during their pregnancies. This study also will collect data on their infants.
* Colorectal Cancer: To encourage more people with CF to get screened, the
NICE-CF study ([link removed])
will look at the use of stool-based testing, a non-invasive option, to understand who would benefit from further testing by undergoing a colonoscopy.





New Race-Neutral Lung Function Standards

Historically, the lung function (measured by a pulmonary function test or PFT) of a person with CF has been compared to average lung function for a healthy person with similar characteristics, including biological sex, age, height, and race. In line with new guidance published by the American Thoracic Society, the
Foundation’s Patient Registry will no longer use race as a factor ([link removed])
when reporting lung function data. The race-neutral equations are intended to help correct the inequities that could result from interpreting PFT data differently by race.

People with CF may see changes to their PFT results -- namely, within their percent predicted values -- as PFT labs across the U.S. adopt the race-neutral equations.
This handout ([link removed])
and
webpage ([link removed])
include basic information about the changes and sample questions that people with CF may want to ask their care teams.



Adapting CF Care Survey Results

Last fall we conducted the Adapting CF Care survey to help inform how the care that people with cystic fibrosis receive could adapt to best meet their needs. The survey results highlighted several important themes and influenced the development of two position papers that will provide interim guidance on the CF care model and care team structure.

Explore the results >> ([link removed])




Promote the PASTEUR Act

People with CF face a heightened, life-long risk of infections, and many battle difficult-to-treat infections for which there are few or no effective antibiotics available. Since 2018, we have invested more than $170 million to advance
research into infections ([link removed]). However, policy solutions are needed to overcome the financial challenges that companies face in bringing a new antibiotic to market. The
Pioneering Antimicrobial Subscriptions to End Upsurging Resistance ([link removed])
(PASTEUR) Act is a bipartisan, bicameral proposal, that if passed, will create an incentive structure that rewards companies that pursue and develop innovative new antibiotics and antifungals. There will be many chances to share your story and urge Congress to pass PASTEUR this year.

Sign up for advocacy alerts ([link removed])
to hear about these advocacy opportunities >>



ResearchCon Recordings Available

In case you missed it, video presentations from
ResearchCon 2024 ([link removed])
are now available in
English ([link removed])
and
Spanish ([link removed]). Topics include newborn screening and the effects of modulators on pregnancy and reproductive health.


DRUG DEVELOPMENT PIPELINE ([link removed])


CLINICAL TRIAL FINDER ([link removed])


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


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