June Update

IN THIS EDITION:

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 for those who meet eligibility criteria. Visit the Clinical Trial Finder 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] or by filling out an inquiry form.

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:

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 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 and webpage include basic information about the changes and sample questions that people with CF may want to ask their care teams.

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 >>

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. 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 (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 to hear about these advocacy opportunities >>

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