Community Voice: Monthly Results Update

Dear Community Voice member,

Welcome to the November edition of the Monthly Results Updates!

New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, browse previous editions.

Over the past two years, the CF Foundation has conducted listening efforts to learn more about how CF affects people of different racial and ethnic backgrounds and the needs and challenges they may face. The CF Foundation developed the Communities of Color Call for Input Group and conducted a survey to better understand the engagement barriers specific to the people of color in the CF community. From the survey, three major themes were discovered including the need to improve representation, education, and resources. These themes were then explored through focus groups with adults with CF and caregivers to identify gaps and key insights. Learn more about the findings, which are being disseminated to CF Foundation staff, care center staff, and the Racial Justice Working Group to inform work and recommendations for 2022. Thank you to those who bravely shared their stories and insight into how to improve engagement of people of color with CF in cure, care, and community spaces. Please stay tuned for an update on this work, which will include a comprehensive report from the focus groups!

A research team from Emily’s Entourage, a non-profit organization dedicated to fast-tracking research and drug development for rare, nonsense mutations of CF, conducted a survey to better understand the current health status, impact of CF, and unmet needs of those who do not benefit from existing cystic fibrosis transmembrane conductance regulator (CFTR) modulators. More than 400 respondents participated in the survey which was presented to the U.S. Food and Drug Administration in July as part of a patient listening session. These insights played a critical part in providing an accurate and compelling picture of the urgent, unmet therapeutic needs of those who do not benefit from currently available CFTR modulators due to ineligible mutations, side effects, or lack of access. Thank you to everyone who participated in this project!

Designed by adults with CF, family members, clinicians, researchers, and more, the CF Foundation’s community conferences the CF community the opportunity to connect, share, and learn through open and honest dialogue. A call for applications was sent to more than 1,300 Community Voice members to help shape ResearchCon 2022, a free virtual event dedicated to CF science and research for anyone with a personal or professional connection to CF. After receiving 20 competitive applications, we are pleased to announce the following Community Voice members who will serve on the ResearchCon 2022 Executive Committee!

A research team from the University of Washington and Seattle Children’s Research Institute recently conducted focus groups with more than 30 Community Voice members to gather valuable perspectives on the use of home spirometry devices in clinical research and receive feedback on how to optimize the participant experience in future clinical trials. Key insights from the focus groups included potential strategies for virtual coaching by research staff and enhancing participants’ confidence in the use of home spirometry, as well as ideas for training materials and engagement strategies that can be tailored by the participant’s age and experience with using home spirometry. The research team’s next steps include collaborating with people with CF and their caregivers to develop study materials that will enhance the participant experience for the upcoming OUTREACH study which will focus on home spirometry. Thank you to everyone who participated in these focus groups!

The CF Foundation’s Impact Grants provides grants of up to $10,000 per year for up to two years to individuals or organizations for programs that engage and empower the CF community. Launched in 2016, this program reflects the Foundation's commitment to help people with CF live full lives and has supported a wide range of ideas focusing on everything from voice lessons for people with CF to strengthen breathing and build confidence, to virtual health and wellness coaching, to parental and spousal support. In preparation for the next Impact Grant application cycle, a survey was conducted to understand the community’s priorities for future grants and guide recruitment efforts with community members interested in applying for a grant. The survey’s results revealed an interest for programs on topics including exercise, practical or vocational support, affinity groups, support/education programs for parents, and more. Thank you to everyone who participated in this survey!

A research team at Rutgers University is interested in examining eating behaviors and psychological characteristics between those with and without diet-related chronic health conditions such as CF, diabetes, Crohn’s disease, ulcerative colitis, and celiac disease. They are looking for young adults ages 18 – 30 in the US who have been diagnosed with a chronic health condition to participate in a 30–45-minute survey. Findings from this study will inform the development of educational resources that can help prevent disordered eating in populations with diet-related chronic health conditions.

Please note this is an external opportunity hosted beyond the CF Foundation. If you are interested in participating in this study, please click on the button below by Monday, January 31 at 11:59 p.m., ET. Participants will be entered to win one of five $20 gift cards.

Check out these recent blog posts by Community Voice members! Community Voice currently has 143 members who have written 323 posts since the CF Community Blog launched. 

Interested in sharing your story? The CF Community Blog wants to hear from you.