Community Voice: Monthly Results Update
January 2025 Edition
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Dear Community Voice Member,
Welcome to the January 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:
- Updates from the Prioritizing Research in Mental Health (PRIME) Working Group
- Update from interviews surrounding Equity in Clinical Research
- New chapters in the CF Sexual and Reproductive Health Guide now available
If you would like to read about past projects, browse previous editions.
If you or a loved one has been impacted by the LA-area wildfires, the CF Foundation’s Compass team is standing by to help ensure that people living with CF and their families get the care they need. They can help with getting emergency access to medications and medical devices that were left behind, lost, or damaged. If you or a loved one needs help, please contact Compass at cdt@cff.org or 844-COMPASS.
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Prioritizing Research in Mental Health (PRIME) Working Group
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The Prioritizing Research in Mental Health (PRIME) Working Group is a dedicated group of researchers, clinicians, two adults with CF, and now two parents of children with CF whose aim is to help shape the direction and priorities in research around mental health for people with CF and their loved ones. PRIME’s first year was focused on better understanding the impact of Trikafta on mental health.
At their most recent annual meeting in July 2024, the PRIME Working Group identified several priorities for research questions and project ideas in its second year:
- Exploring the impact of CF management on mental health, particularly among children and adolescents
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Investigating the effects of CF on family dynamics, including finding ways to support parents and caregivers
- Choosing study measures that are easier for participants to use and lead to clearer data
PRIME members are currently supporting the development of the RETRIAL study for people with CF who plan to start Alyftrek after having to reduce or discontinue Trikafta due to mental health symptoms. This study aims to begin enrolling participants in early 2025. PRIME members are also working with researchers on a study to investigate depression, anxiety, and behavior problems in children with CF who are under 12 years old.
We celebrate the PRIME Working Group for expanding its community representation this year, and we thank Thalía Castillo and one other community member for sharing their time and expertise with the group!
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Equity in Clinical Research Interview - Update
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Data has shown there is a lack of representation of people of color in CF-related clinical trials. There is also a gap in understanding the challenges that Black and Hispanic people with CF encounter in participating in clinical research. To work to close this knowledge gap and support broader participation, researchers at the University of Washington interviewed 12 adults with CF who identify as Black and/or Hispanic to better understand their thoughts about clinical research, what makes it easier or harder for them to participate, and patient-centered solutions to improve inclusion. Participants highlighted the following themes:
- The lack of representation of minoritized patients and staff at CF centers contributes to a sense of isolation.
- There is a need to hear more about the experience of minoritized people with CF in research and broader CF-related media.
- There is a need to further evaluate narrow inclusion criteria for CF clinical trials, with feelings that this criteria sometimes prevents them from joining studies.
The research team is continuing to review the data collected and will work closely with the CF community to develop ways to improve research and care to support more inclusion and equitable participation. Thank you to the five Community Voice members who participated in these interviews!
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Updated CF Sexual and Reproductive Health Guide Now Available
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The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) brings together patients, clinicians, and researchers working together to improve sexual and reproductive health knowledge, resources, and standards of care for people with CF. Their online CF Sexual and Reproductive Health Guide is created by people with CF to help facilitate conversations between providers and patients on a range of topics.
Over the last two years, the CFReSHC team, in partnership with more than 10 Community Voice members, has been updating the guide with new information about the intersection of mental health and modulators with each topic it covers. It now includes updated peer-to-peer advice, questions to start conversations during clinic visits, and resources in chapters on family planning, infertility, body image, contraception, parenthood, and more.
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This year, CFReSHC will also update its chapters on bone and heart health, menopause, incontinence, vaginal health, and sex, gender, and sexuality. Learn more about how you can share your experiences with these topics in the “Open Opportunities” section below!
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Celebrations in the Month of February
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Black History Month
We are proud to recognize February as Black History Month, a month to celebrate the legacy, achievements, and contributions of Black Americans in their families, workplaces, and communities. Join us in using this observance month to celebrate the diversity within the CF community and build a more inclusive community together.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to menopause and peri-menopause, financial wellness, and burdens associated with digestive system issues and aging with CF (more information below).
CF Foundation Long-Term Strategic Planning: Digestive System Issues and Aging with CF
The CF Foundation is continuing work to support its next strategic plan, including a follow-up survey on CF community experiences with digestive system issues and aging with CF. The survey will launch in February and results will help further guide strategic planning related to the burdens people with CF experience in daily life. Watch your inbox for an invitation to participate in this survey in early February!
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Peer-to-Peer Advice and Questions to Ask at Clinic
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The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) would like to hear from adults with CF as part of ongoing updates to its free online CF Sexual and Reproductive Health Guide. The CFReSHC team is seeking peer-to-peer advice or suggestions for questions to use in clinic related to the intersection of mental health and/or modulators with the following topics:
- Bone Health
- Heart Health
- Menopause
- Incontinence
- Vaginal Health
- Sex, Gender, and Sexuality (including gender identity and/or sexual identity)
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Please note this opportunity is not hosted by the CF Foundation. If you have any questions or want to learn more, please contact Sandy Sufian (CFReSHC co-founder) at the University of Illinois at Chicago.
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CF Circles: Sexual Health and Living Longer with CF
CF Circles are topic-based small group discussions, primarily for adults with CF, to gather virtually with a handful of people to talk about their unique experiences. Attendees are divided into small breakout groups of approximately 5-10 individuals based on their specific experiences, with each group led by a member of the CF community who has been trained to facilitate discussion and create a welcoming environment.
Sexual Health: February 25 at 7 p.m., ET
Open to: Adults with CF, ages 18+
This session offers a comfortable space to connect with other adults with CF who share similar sexual health experiences. There is no set agenda, but topics may include discussion of hormones, incontinence and UTIs, side effects of medication, or menopause.
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Living Longer with CF: March 25 at 7 p.m., ET
Open to: Adults with CF, ages 40+
This small group discussion is a supportive environment where adults with CF ages 40+ can connect with their peers. Previous topic discussions have ranged from navigating changes in health to work transitions and redefining your expectations of aging. Join the conversation to share insights, foster connections, and explore what aging with CF means for you.
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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 196 members who have written 431 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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