Community Voice: Monthly Results Update
December 2025 Edition
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Dear Community Voice Member,
Welcome to the December 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:
- Full results from the CF and Menopause Survey
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Individual experiences with Long-Acting Reversible Contraception and CF
- Community attitudes on transition from pediatric to adult CF care
- How to watch recordings from this year’s North American Cystic Fibrosis Conference
If you would like to read about past projects, browse previous editions.
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Menopause in CF: Full Results Now Available
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Earlier this year, we shared some initial takeaways from a May 2025 survey about menopause in CF, in which researchers aimed to better understand how women with CF experience menopause, and how it may be different from those who do not have CF. We are now pleased to share the full survey results, which include details about the menopause symptoms women with CF experience, how they manage them, what providers they discuss menopause with, and more.
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As a next step, researchers are interviewing women with CF to learn more about how their CF and menopause symptoms interact and how they affect women’s quality of life. Interview results will be used to help clinicians understand how best to guide women in these life stages. Stay tuned for more updates as the work continues!
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CF and Long-Acting Reversible Contraceptives Experiences: Initial Findings
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Researchers from the University of Pittsburgh are interviewing people with CF about their experiences with and need for long-acting reversible forms of contraception, including intrauterine devices (IUDs) and hormonal implants (such as Nexplanon).
Since June, 21 people with CF (ages 18 to 35) participated in individual interviews, sharing their thoughts on having or removing this type of contraception. Some key themes included:
The study team plans to continue work to address misinformation and uncertainty related to the impact and safety of these forms of contraception for people with CF. Thank you to the 17 Community Voice members who participated in this work!
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Transitioning from Pediatric to Adult CF Care: Early Survey Results
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Researchers at the University of California, San Franciso developed a brief survey to understand CF transitions and the impact of barriers to transitions from pediatric to adult CF clinic. Community Voice members, including young adults with CF and parents of young adults with CF, participated in the survey in early 2025. So far, 28 people have taken the survey, and a few themes have emerged:
- Many participants expressed a deep emotional connection to their pediatric CF teams, often feeling “ready,” yet simultaneously worried about losing the familiarity, coordination, and personalized attention.
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The most commonly reported ideal age for transition was around 21–22 years, with respondents linking this to increased maturity, greater life stability, and less overlap with other major transitions such as starting college.
- A smaller group of survey respondents preferred earlier transitions (18–19 years), emphasizing the importance of gradual autonomy.
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Common challenges to the transition included limited structured preparation, inconsistent communication between pediatric and adult programs, and uncertainty around what to expect in adult care.
- Respondents also highlighted opportunities for improvement — especially more individualized readiness assessments, earlier introductions to the adult CF team, and better education around insurance, medications, and self-advocacy.
Researchers are working to gather more survey responses which will allow for broader insights and will share updated results in the coming months.
Thank you to the 26 Community Voice members who participated anonymously for sharing your time and experiences to improve the care and support of CF patients as they transition from pediatric to adult clinics.
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NACFC Recordings Now Available
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Missed out on NACFC? Get caught up on sessions and plenaries by watching the session recordings and watch the Highlights Webinar recording where two CF researchers discussed the top research and care news from the conference and answered audience questions. You can also check out the ways in which Community Voice members like you made an impact at NACFC by sharing your experiences through surveys, focus groups, committees, and more!
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2026 National Annual Meeting
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Join us virtually Wednesday, Jan. 14, at 8 p.m. ET/5 p.m. PT, for our National Annual Meeting! You’ll hear directly from CF Foundation leadership, including President and CEO, Michael Boyle, MD; Chief Scientific Officer, Steven Rowe, MD; and Irena Barisic, Executive Vice President and Chief Operating and Financial Officer, who will answer your questions and highlight their vision for the future of the Foundation.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to mental health, clinical research protocols, and nutrition and digestive issues with CF during pregnancy.
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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 221 members who have written 470 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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