Community Voice: Monthly Results Update
November 2024 Edition
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Dear Community Voice Member,
Welcome to the November 2024 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:
- Community participation in the Long-Term Strategic Plan Survey
- Next steps to support CF carrier use of
modulators during pregnancy
- Focus group to inform Medicaid and Patient Registry Database analysis
- New members joining several workgroups and committees on mental health, sexual and reproductive health, and more
If you would like to read about past projects, browse previous editions.
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Long-Term Strategic Plan Survey - Update
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In September, the CF Foundation shared its Long-Term Strategic Plan survey where community members provided their feedback to help shape the next chapter of the Foundation’s mission-driven work. We want to thank everyone in the cystic fibrosis community who participated in the survey! Together, nearly 2,000 people shared their perspectives about how to best support the ever-evolving community. Of those 2,000 people, 164 Community Voice members took the survey in English and five members completed it in Spanish. Your feedback will inform the Foundation’s priorities to drive continued progress in cure, care and community. We will share detailed results next year, and the strategic plan will be shared in 2026.
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On November 15, the CF Foundation hosted the Prenatal Modulator Treatment to Prevent CF Complications (PROTECT) Workshop in Bethesda, Md. The workshop brought together researchers, clinicians, and CF community members to review current research, identify potential risks associated with prenatal use of modulators by CF carriers (people who do not have CF), and discuss considerations for research and study design. Workshop participants identified opportunities to develop a standardized method of reporting case studies, discussed a potential toolkit to help community members and providers access Trikafta, and identified journals in which to share findings from the workshop. Next steps include creating a multi-disciplinary group to finalize journal publications and to develop educational materials for community members and providers.
We thank Jayme DePalo, Elizabeth Guzman, Stephanie Marquart, Lacey Norton, and Faith Shropshire, who lent their time and expertise to the conversation, as well as the many other community members who expressed interest in this topic. We look forward to sharing more related opportunities in the future!
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Registry and Medicaid Database Analysis
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This August, researchers from the University of North Carolina at Chapel Hill and Rutgers University hosted a focus group to gain community input on their research proposal examining data on CF care from the CF Foundation Patient Registry and a national Medicaid database. Researchers hope to learn how Trikafta influences individual decisions about stopping other medications and potential side effects of Trikafta, including liver problems or changes in mental health.
Focus group participants shared useful feedback to shape the researchers’ study proposal, including:
- How inhaled medications are viewed as the greatest burden, especially Pulmozyme, since it needs to be refrigerated
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The importance of finding the best approach to stopping inhaled treatments, and which one would lead to the least side effects
- Concerns about Trikafta side effects (such as depression, liver disease and insomnia) and how dosing strategies have been used to help minimize them
If their work is funded, researchers will seek additional community participation in this work. Thank you to the seven Community Voice members who participated in this focus group!
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Success with Therapies Research Consortium (STRC) Steering Committee Recruitment
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The CF Foundation Success with Therapies Research Consortium (STRC) Steering Committee oversees clinical studies to identify what gets in the way of daily care and test solutions that are effective, practical and sustainable. This past July, the committee sent a call through Community Voice for adults with CF and parents of children with CF to join and received 38 strong applications. We are happy to announce the three Community Voice members that were selected to serve on the committee for a 3-year term.
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Melanie Lawrence
(adult with CF)
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(parent)
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Mental Health Advisory Committee
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The CF Foundation Mental Health Advisory Committee’s (MHAC) Education and Training Subgroup supports the development of resources on CF and mental health that are shared with the community on the CF Foundation’s website and through their care teams. This past August, the committee sought to recruit a parent of a child with CF to join other community members on the committee. We are excited to share that Megan Von Isenburg was selected to serve on the committee for a 3-year term.
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CFReSHC Chapter Revision Work Group
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In September, the CF Reproductive and Sexual Health Collaborative (CFReSHC) invited five Community Voice members to a work group to update the CF Sexual and Reproductive Health Guide. Together with clinicians and researchers, Community Voice members will update chapters on incontinence, menopause, sex/gender/sexuality, and vaginal health with information on mental health and modulators. The work group will also draft two new chapters on bone health and heart health. Thank you to the following five Community Voice members (one not pictured) for lending their time and expertise to this project!
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Keep an eye out for upcoming opportunities in the next few weeks to share your experiences with nontuberculous mycobacteria, menopause and perimenopause, and other topics. Our annual Community Voice survey will also launch in early December – we always appreciate your feedback!
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PRIDE CF
Adults living with CF (ages 18+) who identify as lesbian, gay, bisexual, transgender, queer, intersex, and/or asexual (LGBTQIA+) can participate in online surveys as part of the PRIDE CF study. PRIDE CF is the first study of its kind aiming to learn about, understand, and incorporate LGBTQIA+ experiences into improving routine CF care. Learn more and enroll.
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The Prevalence, Severity & Measurement of Pain in Cystic Fibrosis - a Survey Pilot Study – Reminder
Researchers in Australia are engaging the global CF community through an anonymous survey to explore the characteristics of pain in the CF community. If you are interested in participating, you can take the survey or click the button below. This survey opportunity is hosted by Southern Cross University in Australia and will be open through December.
Please note this survey is not hosted by the CF Foundation. If you have any questions, please email researcher Anastasia Ward at Southern Cross University.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 192 members who have written 426 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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