Community Voice: Monthly Results Update
May 2024 Edition
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Dear Community Voice Member,
Welcome to the May 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:
- Publication Announcement on CRMS/CFSPID Guidelines
- Update on results from the Adapting CF Care Survey
- Update on the changes made to the Pulmonary Function Test (PFT) Equation
- Members selected for the
Community Support Grants Review Committee
- Survey and Interviews for the Exploring Attitudes Towards Nutrition (EATN) Study
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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CRMS/CFSPID Guideline Publication - Update
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In 2023, the Cystic Fibrosis Foundation sought to update the CFTR-Related Metabolic Syndrome (CRMS) guidelines that were published in 2009. These guidelines address CRMS and CF Screen Positive Inconclusive Diagnosis (CFSPID), which occurs when an infant receives a positive newborn screening result with an inconclusive diagnosis. Children with CRMS/CFSPID are asymptomatic, have two CF genetic variants, and a normal or intermediate sweat chloride test result. The CF Foundation recommends that these children should be followed routinely over several years to assess the risk of developing CF symptoms and rising sweat test values.
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A committee of health care providers with expertise in CF and CRMS as well as parents of children with CRMS researched and developed the recommendation statements in a draft that went out for public comment. We are excited to announce that the guidelines have now been published in the journal Pediatrics. A big thank you to those who provided feedback to the guidelines via Community Voice!
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Adapting CF Care Survey Results - Update
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Last fall the Cystic Fibrosis Foundation conducted the Adapting CF Care survey to understand how care for people with cystic fibrosis could adapt to best meet their needs. The survey results influenced the development of two draft position papers that will provide interim guidance on the CF care model and care team structure and highlighted several important themes:
- Most adults with CF and caregivers still value in-person clinic visits.
- Adults with CF and caregivers value their relationships with their CF care teams.
- Adults with CF, caregivers, and clinicians want telehealth to be an option for CF care visits.
- Most, but not all, adults with CF have a primary care provider.
Thank you to the more than 1,200 adults with CF, caregivers, and clinicians who completed the survey! A more detailed summary of the survey results with be available this fall.
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Pulmonary Function Test (PFT) Equation Changes
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As part of the organization’s ongoing commitment to equity, racial justice, diversity, and inclusion (ERJDI), the CF Foundation is developing resources for patients and clinicians to explain the impact of race-neutral pulmonary function test (PFT) equations and how changes to these equations might impact individuals with cystic fibrosis. In March, six Community Voice members participated in a discussion to gauge their reaction to a draft patient handout explaining the changes. These community members shared their input as part of the Black CF community and have had a significant impact on advance ERJDI work through their active role on ERJDI advisory groups. Their feedback has been incredibly valuable, and CF Foundation staff have leveraged their input to plan communications related to these changes. Along with the patient handout, their feedback informed the creation of a discussion guide for care teams to use with patients.
We would like to thank Community Voice members Jaelyn Cooper, Lathronia Jefferson, Anthony McDaniel, Michelle Patrovani, Annette Perry, and Tiffany Thornton for their time in providing feedback to inform these resources!
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Community Support Grants Review Committee
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For the first time ever, the Cystic Fibrosis Foundation Community Grants team sought to recruit adults with CF to join a committee to review Community Support Grant applications submitted by members of the CF community. These grants provide additional support to previous CF Foundation Impact Grant recipients who continue to innovate how they engage and empower people with CF and their families. This committee was previously composed of Adult Advisory Council (AAC) alumni but has since opened up to a broader audience, while remaining available for AAC members who have met their 2-year term limit. Special thanks to the Community Voice members who will serve a 2-year term on this committee:
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Celebrations in the Month of June
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LGBTQIA+ Pride Month
This June, we are excited to celebrate Pride Month! It’s a time to honor the legacy, contributions, and accomplishments of the lesbian, gay, bisexual, transgender, queer and questioning, intersex, and other identities (LGBTQIA+) community. Join us in using this month to celebrate diversity within the CF community and build a more inclusive community together where everyone feels welcome.
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences including interviews on equity in clinical research, a survey to help decide which NACFC sessions are livestreamed, and more!
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Exploring Attitudes Towards Nutrition (EATN) Study
Researchers at the Boston Children's Hospital are exploring attitudes towards nutrition in the adult CF community. They are seeking 10-15 additional adults (ages 18+) with CF who have a gastronomy-tube, identify as a person of color, speak Spanish, or have received an organ transplant. Participants would be asked complete a brief online survey, followed by two 30–60-minute interviews (in English or Spanish) over Zoom or telephone. Participants would be compensated $30 per interview for their time.
If you would like to participate, please fill out the survey below. Please note this is an external opportunity hosted beyond the CF Foundation.
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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 184 members who have written 411 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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