Monthly Results Update


The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation. 

Dear Community Voice member, 
Welcome to the March 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, click here to browse previous editions.
Open Opportunities:
Register for ResearchCon
Mark your calendars! Join us on April 15 and 17 for ResearchCon, a free, online event for anyone with a personal or professional connection to CF, age 16 and older.

CF researchers, clinicians, and community members will share the latest information on research studies on a variety of topics in CF science and care including outcomes and long-term impacts of Trikafta, impact of COVID-19 and telehealth, disparities in CF care and experiences, and genetic-based therapies. The event will feature live presentations, Q&A, research roundtables, and workshops. Check out the full agenda for a detailed list of all sessions and register today. 
Register for ResearchCon
Apply to Join the Spanish Language Community Review Committee
The CF Foundation is currently recruiting fluent Spanish-speaking members within the CF community to join the Spanish Language Community Review Committee. The goal of this committee is to help review materials that have been translated from English to Spanish and ensure the content is coherent, culturally appropriate, and lay-friendly.

Click here to learn more about the expectations and goals of this group. To apply for a position on the Spanish Language Community Review Committee, please click here to complete the brief application.
Click Here to Complete Application
Publication Announcement:
Virtual Engagement Best Practices for Patient-Centered Outcomes Research Teams
We are pleased to announce that the recently published article, “Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study,” is now available in the Journal of Participatory Medicine. People living with CF have been familiar with the benefits of virtual communication long before the pandemic, with this past year being no exception. Because of this, researchers at the University of Washington conducted 15 interviews with CF patients, caregivers, and researchers to learn about their experiences with web-based collaboration platforms.

Through this study, the research team identified solutions to common challenges regarding web-based platforms which informed a best practices guide on virtual engagement. This guide is available for use by patient-centered outcome research teams that collaborate virtually or recently transitioned from traditional in-person collaboration due to the COVID-19 pandemic. Click here to view the study’s findings and best practices guide. Thank you to those in Community Voice who helped author this article, and congratulations on all your hard work! 
Pain Management Guidelines Committee
Acute and chronic pain is a common health condition for people living with CF and managing its symptoms is crucial to maintaining one’s quality of life. The CF Foundation recently established the Pain Management Guidelines Committee to better focus on the pain and symptom management needs of individuals with CF and develop new clinical care guidelines. A call for applications was sent through Community Voice and the committee received 18 applications. The co-chairs reviewed applications and hosted interviews with top candidates to ensure that the committee would consist of members with different perspectives and experiences. We are pleased to announce that Anthony McDaniel, Jessica Millard, and Kasey Raffensperger have joined the group!

Anthony McDaniel
Jessica Millard
Kasey Raffensperger
All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.
CF PROSPER Study Survey
For women with CF, there are many important factors that are important to consider before starting a family. Researchers from Cardiff University developed the CF PROSPER study to better understand the perceptions of how pregnancy/parenting has affected the health of women with CF, and how they approach these important decisions. More than 180 women participated in this international study. To learn more about the findings from this study, please click here. These insights are now being used to supplement findings from in-depth interviews. To date, 16 interviews have been held to provide additional insight into what information is crucial when making decisions about having a family. Thank you to every woman who participated in this project and stay tuned for a final update!
Men’s Sexual and Reproductive Health Interviews
As people with CF live longer, healthier lives, it is also important to address the sexual and reproductive health issues of men with CF. Researchers from the Children’s Hospital of Pittsburgh conducted 24 interviews to better understand their sexual and reproductive health needs and preferences, particularly surrounding sexual health, fertility, and parenthood. Nineteen men with CF in Community Voice, ranging in age from 19 to 60 years old, participated to share key insights, including: 
  • CF-related sexual and reproductive health concerns, such as infertility, can affect men's self-image and romantic relationships
  • Men are uncertain if and how their CF affects their sexual and reproductive health, and whether their CF team can address these concerns
  • CF care teams should educate male patients about sexual and reproductive health issues over several years, starting in early adolescence
  • Men with CF value resources that include the sexual and reproductive health experiences of other men with CF
Click here to view the project’s abstract. The research team is also applying for funding for a multi-site survey study that will aim to gather insights from 500 additional men with CF. Thank you to those in Community Voice who participated in this project!
Talking with Children about Chronic Illness Resource Review
Parenting can be tough, and it can be even more challenging as a person with CF who wants to help their child understand chronic illness. To help provide support for adults with CF who are parents, the CF Foundation’s Mental Health Advisory Committee worked with members of Community Voice to review educational resources meant for parents living with any type of chronic illness, as well as to determine whether they were valuable enough to adapt specifically for parents living with CF. Two of three resources adapted are now available on cff.org, including Balancing Family Life and CF and Talking With Your Child About CF. These resources will also be available for CF care centers to distribute to patients and families. Stay tuned for an update on the final resource and thank you to everyone who provided their feedback on this project!
Sharing Insights & Experiences Through the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 137 members who have written 306 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.
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