Community Voice: Monthly Results Update
March 2023 Edition
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Dear Community Voice Member,
Welcome to the March 2023 edition of the Monthly Results Updates!
In these digests, you will learn about the impact Community Voice members are making through participation in recent opportunities. A friendly reminder that 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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Publication Announcement: Post-Transplant Care for Individuals
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Back in March 2022, the CF Foundation solicited feedback from the CF community through Community Voice on a draft manuscript. A year later, we are pleased to announce that the recently published article, “Position Paper: Models of Post-Transplant Care for Individuals,” is now available in the Journal of Palliative Medicine. This publication offers models of care which will be used by CF and transplant centers that share or coordinate care of lung transplant recipients with CF. Thank you to every Community Voice member who helped inform these guidelines, from participating in a survey to share your insights about the importance of palliative care in CF to providing additional feedback on the guidelines during its public comment period.
Learn more about the CF Foundation’s clinical care guidelines and the guideline development process.
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Register for ResearchCon 2023
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ResearchCon 2023 is upon us, and we would like to invite everyone to attend, whether your connection to cystic fibrosis is a personal one or a professional one. Attendees of this conference will learn and discuss CF-related science and care alongside others living with and studying the disease. All attendees can explore their curiosity and engage with the whole CF community, including experts and peers. Continue reading to learn more about the speakers for this event. ResearchCon will be held April 26-27, 2023.
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BreatheCon & ResearchCon Speaker Recruitment
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In December, the CF Foundation’s Community Conferences team recruited several community members to serve as speakers for BreatheCon and ResearchCon. Speakers for each Conference help to plan content around specific topics and to share their personal stories during the virtual events.
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BreatheCon is a unique, multi-day online community conference to gather with other adults with cystic fibrosis. BreatheCon offers a variety of ways to participate such as topic discussions, creative activities, and opportunities to build new friendships. BreatheCon was held February 23-25, 2023. A big thank you to the community members who spoke at this event!
- ResearchCon is a multi-day online community conference for everyone with a personal or professional connection to cystic fibrosis. A big thank you to the community members who will speak at this event!
We would like to thank these speakers and volunteers from the CF community who make these events possible!
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Researchers from The Hospital for Sick Children, Toronto, University of North Carolina, Chapel Hill, and Seattle Children’s Hospital welcomed 2 parents of children with CF to be part of the LITE study review team. Over the last 10 months, these community members have provided important insights regarding the potential role of the multiple breath washout (MBW) and the lung clearance index (LCI) in clinical care.
Additionally, Community Voice hosted a focus group on behalf of the research team to learn more about the community’s experience and attitudes toward the multiple breath washout test and the challenges of implementing this test in routine clinical care. These insights will inform the design of a randomized study investigating whether LCI informs clinical decision making and improves outcomes in children with early CF lung disease.
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Recommendations to Advance Equity, Racial Justice, Diversity, and Inclusion
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We would like to share the CF Foundation’s newly published Recommendations for Equity, Racial Justice, Diversity, and Inclusion. This resource highlights recommendations that were made by the External Racial Justice Working Group (ERJWG) a diverse group of community members, researchers, clinicians and CF Foundation staff. Recommendations include how the CF Foundation can improve its programs, processes, and policies to produce more equitable and just outcomes in the following areas:
- Health Equity & Outcomes
- Diverse Workforce Development
- Community
Learn more about the recommendations to advance equity, racial justice, diversity, and inclusion by visiting the Foundation’s commitment to equity, racial justice, diversity, and inclusion webpage.
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Wellness in the Modulator Era (Well-ME) Survey - Update
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In 2022, the Wellness in the Modulator Era (Well-ME) Survey was launched and received an overwhelming response of over 1,000 community members sharing their experiences. The goal for this survey was to dive deeper into how modulators impact overall wellness including quality of life, mental and physical health, and financial and social wellbeing. A multi-disciplinary team of four Community Voice members, care team members, CF Foundation staff, and researchers from The Dartmouth Institute of Health Policy & Clinical Practice helped develop the survey. Preliminary results were first presented as an abstract during a NACFC workshop. The next steps for this effort include publishing multiple manuscripts to inform future research.
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UPCOMING & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as CF Care Model, GI experience, SDOH in clinic, medical traumatic stress, and more. In the meantime, check out open opportunities to participate in today!
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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 161 members who have written 368 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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