Community Voice: Monthly Update
October 2026 Edition
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Dear Community Voice Member,
Welcome to the October 2026 edition of the Monthly Update!
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:
Browse previous editions to read about past projects.
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Annual CF Insights Survey - Update
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Thank you to the 1,529 community members who completed the Annual CF Insights Survey. Your responses will help the CF Foundation, care teams, and researchers better understand what is and is not working, and where more support is needed. We look forward to sharing results in early 2027.
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Updates from the PRIME Annual Planning Meeting
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The Prioritizing Research in Mental Health (PRIME) Working Group — comprised of CF clinicians, researchers, and community members — helps shape the direction of and priorities in clinical research into mental health for people with CF and their loved ones. In July, PRIME held their annual planning meeting to assess opportunities for research and collaboration in the upcoming year. Themes that emerged from discussions and project ideas included:
- The brain/body connection: PRIME members discussed the relationship between sleep disturbances, CF-related diabetes, nutrition, digestive system symptoms, and mental health, and outlined plans to collaborate with specialists on each of these topics.
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Neurocognition, CFTR modulators, and brain health: The group discussed current research on brain health in CF, including work to understand how CFTR functions in the nervous system and how it may be impacted by modulator use.
Across topics and themes, PRIME members agreed that their work should move beyond descriptive studies and focus on tangible outcomes like new treatments and programs for people with CF and their loved ones. They also reiterated the importance of incorporating community input and priorities into their work.
We will continue to share updates on PRIME’s work and the studies they support. We thank the four Community Voice members who share their time and expertise with this dedicated working group.
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CF Circles: Discuss the Financial Challenges of Life with CF
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Interviews: Opportunity to Provide Feedback on a G-tube Decision Aid for Children with CF
Researchers at Children's Healthcare of Atlanta and Emory are conducting a study that aims to improve gastronomy tube (G-tube) decision-making in early CF care. They have created an online tool for families considering G-tube placement. They are looking for parents and caregivers to provide feedback on the tool (30-to-45-minute audio recorded interviews) to help ensure it is understandable and usable for families.
Researchers are seeking parents or primary caregivers of children ages 1-10 who have had a conversation with their care team about a G-tube placement for their child with CF but do not currently have a G-tube. To learn more about the study, please contact Kimberly Dickinson MD/MPH by email at kdickin@emory.edu. Parents or caregivers who complete an interview will receive a $75 gift card for their time.
Please note this is an external opportunity hosted beyond the CF Foundation.
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Watch for opportunities to provide input on Infection Prevention Control International Guideline Public Comment, Cystic Fibrosis Quality of Life Questionnaire Interviews, 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 231 members who have written 489 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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