Community Voice: Monthly Results Update
April 2025 Edition
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Dear Community Voice Member,
Welcome to the April 2025 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about:
- New guidelines on CF Newborn Screening
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One family’s experience with newborn screening and delayed diagnosis
- An update on the Sputum Survey and airway infection detection research
- Multiple updates from the PRIDE CF Study
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A new Explainer Video for Community Voice
If you would like to read about past projects, browse previous editions.
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New Guidance on Newborn Screening
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Community Perspective in Medical News: Newborn Screening and Delayed Diagnosis
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Patient and family stories can be powerful tools for improving health care and educating providers. However, these lived experiences – told in a person’s own words – are not often present in medical literature and other publications that health care professionals read. Johns Hopkins Center for Health Security launched the Voices in Print project to empower patients and advocates to share their stories in more places where providers will see them.
In late 2024, Voices in Print partnered with Community Voice member Rena Barrow to tell her family’s CF story in STAT news, a health-focused news outlet. Rena’s editorial, Medicine often fails Black cystic fibrosis patients like my sons, describes her family’s journey, including how two of her children experienced delayed diagnosis 15 years apart, despite a known family history of CF by the time her youngest son was born. She encourages health care providers to recognize that CF can occur in individuals of any racial or ethnic background and to consider additional factors beyond newborn screening results when assessing a patient for a potential CF diagnosis.
We thank Rena for openly sharing her story to advocate for greater equity in CF diagnosis and care for all families!
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“Working with Rena to share her family’s story was inspiring. Her narrative underscores how lived experience can challenge assumptions to drive progress toward more equitable care and ensure that care is shaped by and truly representative of those who are most affected. Voices in Print plans to share many more stories in the coming months!”
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-Alyson Browett, M.P.H, Johns Hopkins Center for Health Security |
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Sputum Survey Update and New Airway Infection Detection Methods in Development
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As some people with CF are less able to produce sputum samples during clinic visits, scientists from the Cystic Fibrosis Therapeutics Development Network (TDN) are working on other ways to detect Pseudomonas and other infections using breath, blood, and urine. To support this work, Community Voice surveyed people with CF and their families in early 2025 about sputum production and compared the results to a similar survey from 2021. The survey results show that people with CF produce sputum less frequently and in smaller amounts compared to 2021, reinforcing the need for new ways to detect infections.
These results were shared with researchers and clinicians at the TDN Spring Meeting in April during a session about current work to develop new detection methods. The CF Foundation recently announced an investment to develop a breath test for lung infections, and we look forward to sharing updates about the development of other detection methods as they become available.
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PRIDE CF Updates: Improving Care for LGBTQIA+ Individuals with CF
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Over the last year, Community Voice members have been participating in various projects as part of PRIDE CF, a multiphase study to understand the care experiences of lesbian, gay, bisexual, transgender, and queer (LGBTQIA+) individuals with CF. The study includes recent, ongoing, and upcoming projects to address this population’s unmet health care needs and develop further resources to improve care:
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LGBTQIA+ CF Community Priorities (2024): As previously shared, community members participated in online brainstorming and a focus group in early 2024 to share their needs and priorities, including health care challenges (like different sexual and reproductive health goals), social challenges (feelings of isolation), and recognizing the equal importance of multiple identities that people may have (CF being just one such identity). People’s experiences varied, with some sharing how navigating being LGBTQIA+ and treating their CF at the same time can be particularly stressful. Others shared their preferences related to fertility counseling, or saw a great need for CF care teams to better understand the needs of LGBTQIA+ people with CF.
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Comparing CF and Non-CF LGBTQIA+ Outcomes (ongoing): More than 40 people with CF (including Community Voice members) will be taking annual surveys over the next three years as part of PRIDE CF. They also enrolled in the broader PRIDE study, the first national long-term effort to understand how being LGBTQIA+ influences people’s health. By participating in both, community members are making it possible for researchers to compare how being a member of the LGBTQIA+ community and living with CF relates to all aspects of health and well-being.
- LGBTQIA+ Care Experiences (upcoming): Researchers will be continuing interviews with people with CF who identify as LGBTQIA+ on topics related to their CF care experiences this spring. Eligible members of Community Voice will receive an invitation to participate in this effort in the coming weeks.
Thank you to all of the Community Voice members who have participated so far in PRIDE CF! We look forward to sharing future projects and results from this work.
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New Video: About Community Voice
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As part of our work to bring new voices into the program, we created a short video (2-min) to help people with CF and their families learn about Community Voice and how they can get involved. The video is available in English with the Spanish version coming out soon!
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We will post the video on CF Foundation social media and the Community Voice website, and are working with CF care teams to share the video with potential new members. A sincere thank you to the Adult Advisory Council and our Spanish Language Community Review Committee for their input on the script!
As the video notes, the bigger picture of what life with CF looks like today and how we can best serve all people with CF is clearer when everyone’s voice is heard. If you know someone who might appreciate learning more about Community Voice – or feel inspired to share with your circles – please consider sharing the video with them!
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Celebrations in the Month of May
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Asian American and Pacific Islander Heritage Month
We are proud to recognize May as Asian American, and Pacific Islander (AAPI) Heritage Month. We invite you to use the month to celebrate the many contributions, achievements, and diversity of the AAPI CF community and help build a more inclusive community together.
Cystic Fibrosis Awareness Month
May is also CF Awareness Month! Community Voice is inspired by every person with cystic fibrosis and the incredible community that supports them. Share your personal accomplishments and milestones on social media using #CFAwarenessMonth to help raise greater awareness of life with cystic fibrosis.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to clinical research priorities, LGBTQIA+ care experiences, and more.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 203 members who have written 441 posts since the CF Community Blog launched in 2015.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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