Community Voice: Monthly Results Update
February 2024 Edition
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Dear Community Voice Member,
Welcome to the February 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:
- Clinical research grant review committees
- Study results on intimate partner violence and CF as a research priority
- Results of the 2023 Community Voice annual survey
- CF
Reproductive and Sexual Health Collaborative (CFReSHC) chapter updates
- A new navigator service to answer your questions about clinical trials
- An upcoming small group discussion related to living without modulators
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A survey on how the cost of life with CF affects you or your loved one's daily life
All Community Voice projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.
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Clinical Research Grant Review Committees
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The CF Foundation’s Clinical Research Program is committed to incorporating CF community input into the decision-making process about what clinical research the organization funds. Community reviewers provide feedback on clinical research grant proposals, including advising on the relevance and importance of the research to people with CF. This feedback is then incorporated into the overall funding decision and shared with the researchers to shape and improve their research plans.
Recently, the Clinical Research Program welcomed new community members to its Clinical Research Committee (CRC) and its Therapy Initiation and Modification in the Modulator Era (TIME) Committee. Community members of the Clinical Research Committee are adults with CF or parents of children with CF who have participated in a clinical trial. They serve a 2-3 year term and review several funding cycles of grant proposals on a range of CF clinical research topics. Community members serving on the TIME Committee will serve a half-year term and review one funding cycle of grants for research on starting, changing, or stopping preventative pulmonary-focused therapies or medications for people with CF on Trikafta.
A sincere thank you to all community members who applied, and congratulations to those selected to serve on the committees:
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From left section: Dena Cohen, Jaelyn Cooper, Leisha Cuddihy, Jaime Galloway, Isaac Groenendyk, and Lisa Trott
From overlapping section: Kristen and Brendan Sullivan
From right section: Jennifer Ashbaugh, Amelia Loran, and Rebecca Preslar
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Intimate Partner Violence
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Intimate Partner Violence (IPV) refers to behavior within a current or previous romantic relationship (married or dating) that causes psychological, physical, or sexual harm. People with chronic health problems may be at higher risk of IPV in some situations. IPV can result in negative health outcomes, including damage to the heart, muscle, digestive, reproductive, and nervous systems. In addition, IPV can result in behavioral health challenges, including depression and PTSD. Little information is currently known about IPV specifically in CF. Researchers at the University of North Carolina at Chapel Hill developed a brief survey to learn more about the CF community's opinions on the importance of studying IPV to gauge whether people with CF and their family members think it is important to study, their willingness to take a future survey about their own IPV experiences (if any), and what they already knew about IPV resources and screening in CF care settings.
The brief survey was sent out to Community Voice and 55 community members responded. The survey was open to adults (18+) with CF and adult family members of people with CF. 89 percent of respondents predicted they would answer honestly about IPV if screened confidentially in clinic. More than half of respondents think studying IPV in CF is extremely important. Over 60 percent of respondents have not been asked about IPV during an outpatient medical appointment.
A brief one pager of the survey results are available to view. The results may be upsetting to read. We encourage you to contact the National Domestic Violence Hotline by calling 1-800-799-7233, texting "START" to 88788, or by chat on their website for help dealing with challenges related to IPV. Thank you to those Community Voice members who participated anonymously for sharing your time and experiences to inform future research on IPV in CF.
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Community Voice: 2023 End of Year Survey Results
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Continuing from previous years, we conducted an annual survey to gather feedback about your experiences as a Community Voice member and how to improve. You can view the full results through the image below.
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These insights will be used to shape our areas of focus throughout 2024, including member engagement, recognition, and outreach. We would like to thank the 122 members who participated in the survey and provided their invaluable feedback.
Have additional ideas, questions, concerns, or thoughts about how to make Community Voice better? We always welcome your input year-round! Please reach out to us at CommunityVoice@cff.org or contact Community Voice Program Manager Caitlin Mitchell (CMitchell@cff.org) anytime – we’d love to connect with you!
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CFReSHC Chapter Revision Work Group - Update
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The CF Reproductive and Sexual Health Collaborative (CFReSHC) partnered with Community Voice to recruit adults with CF to participate in their Chapter Revision Work Group. Members of the work group will update eight (8) existing chapters in their CF Sexual and Reproductive Health Resource Guide with information on mental health and highly effective modulator therapy. The chapters to be updated with mental health and modulator-related research include 1) Family Planning, 2) Infertility, 3) Parenthood, 4) Body Image, 5) Hormones, 6) Sexual Function, 7) Pregnancy, and 8) Contraception. We would like to thank the Community Voice members who were selected to participate in this work group.
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From top left: Shannon Bessette, Miriam Figueira, Laura Lee Joiner, Terri Kollman, Brendan Sullivan, and one other Community Voice member (not pictured).
Additionally, the CFReSHC team is looking to get further feedback to aid their work on sexual function from the survey below. The survey is specifically requesting input from adults with CF who are on modulators and the team is seeking to further understand the changes people with CF have experienced in sexual function with the use of CFTR modulators.
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Please note this is an external opportunity hosted beyond the CF Foundation.
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Clinical Trial Navigator Information
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The CF Foundation is happy to announce the Clinical Trial Navigator. This new resource was developed as a response to community feedback that came from a variety of projects. This resource is responsible for facilitating community member’s awareness and access to clinical trials by improving health literacy, addressing general questions regarding study participation, providing clinical trial referrals, and managing interactions with interested community members. For more information, please refer to the clinical trial navigator slide below.
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Celebrations in the Month of March
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Women's History Month
We are proud to recognize March as Women’s History Month. We invite you to use the month to celebrate the contributions and achievements of women, past and present, who have made an impact on our families, community, and society. Join us in using this observance month to celebrate the resiliency of the CF community and build a more inclusive community together.
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UPCOMING OPPORTUNITIES & OPEN OPPORTUNITIES
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Small Group Discussion on Living Without Modulators
The following opportunity is for adults with CF who are not eligible for, cannot tolerate, or are otherwise not taking a CFTR modulator. It is also open parents of children with CF not taking a modulator because they cannot tolerate or are ineligible for reasons other than age restrictions.
Join other adults with CF and parents of children with CF for a small group discussion to connect and share with others on living without modulators. The discussion will be a 75-minute session on Wednesday, March 6 at 7:00pm ET.
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Discussions will be peer-led with CF Foundation staff present during the conversations. Please note this is not a support group facilitated by a mental health professional. Please contact Kelsey Logan with any questions about this discussion.
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How does the cost of CF affect you? Survey
How has the cost of cystic fibrosis affected your daily life and access to healthcare services? Adults with CF and caregivers of those with the disease who are US residents are invited to share their feedback to help the CF Foundation understand how to inform and support the CF community and care teams in addressing financial issues associated with CF.
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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 177 members who have written 396 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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