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The CF Foundation has been closely monitoring the spread of the coronavirus (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. Please note that participating in Community Voice opportunities is always optional.
Dear Community Voice member,
Welcome to the July 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.
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Opportunities Open for Participation:
Join Ad-Hoc Group on CFTR Modulator Ineligibility/Nonuse
To support the Foundation’s efforts to support people who are ineligible for or unable to benefit from approved (CFTR) modulator therapies, including ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), and elexacaftor/tezacaftor/ivacaftor (Trikafta™), the Community Voice team is forming an ad-hoc group to better understand the needs and experiences of these individuals and ensure this perspective is represented in all our work. As a part of this group, members will have the opportunity to share their insights and participate in various projects surrounding this topic.
We are looking for people with CF, parents of children with CF, and partners of people with CF who:
- Have been diagnosed with nonsense or rare mutations and have not yet been approved to take a CFTR modulator therapy
- Are not approved/taking CFTR modulators for any other reason
It is important to hear from everyone who does not currently benefit from these therapies. If you would like to opt into this group, please fill out the short interest survey by clicking on the button below.
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Upcoming Webinar Today: School Reopening & CF
As schools start to reopen, how can parents, students, and households make the best decisions for people with CF around distance and in-person learning? Join us for a virtual event today, July 30th at 7 p.m., ET as clinical experts discuss the risks and benefits, key factors to consider, and respond to audience questions about school reopening. Also, we would like to thank Community Voice members Ginger Birnbaum, Stacy Van Gorp, and Jacquelyn Sjoberg for their participation in this event!
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Publications Announcement:
Incorporating the Community’s Voice in Clinical Care Guidelines Development
We are pleased to announce that the recently published article, “Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience,” is now available in the Journal of Participatory Medicine. Since 2004, the CF Foundation has incorporated the patient and caregiver voices when developing clinical care guidelines, despite lack of standardization and acceptance in the guideline development community. Consequently, this article exemplifies how incorporating the perspectives of the CF community plays a beneficial and crucial role in the development process, as they provide insights on several aspects otherwise unknown to clinicians.
All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.
CF Lung Transplant Referral Guidelines
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CF Liver Disease Guidelines Scope Survey & Committee
The role of screening for liver complications in patients with CF is increasingly being recognized, especially as its symptoms can be clinically silent. The Foundation recently established the CF Liver Disease Guidelines Committee to help develop new clinical care guidelines for individuals living with CF, as well as liver, biliary, and gallbladder issues. These guidelines will focus on key topic areas including screening and diagnosis, monitoring and prevention, and when and what interventions are needed.
To inform this group’s work, 524 CF care team members, individuals with CF and their family members, and hepatologists participated in a survey to share their experiences with and practice patterns around liver, biliary, and gallbladder disease. In addition, to help ensure that different perspectives and experiences from the community will advise on the development of these guidelines, the committee’s leaders sent out a request to apply for the committee through Community Voice and received eight applications. After careful review of each candidate and several interviews, we are pleased to announce that William Ryan, Stacy Allen, and Tara Goodwin have joined the group!
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Success with Therapies Research Consortium (STRC) Community Input Project Survey
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MAYFLOWERS Study Survey - Update
The MAYFLOWERS Study is now in its planning phase and will investigate maternal and fetal outcomes in women with CF in the era of CFTR modulators. To help support this groundwork, a survey was sent out to CF community members to help the study team better understand the community’s perspective surrounding pregnancy, childbirth, infant outcomes, and use of CFTR modulators during pregnancy and after childbirth. The community’s insights made a valuable impact on the study’s design and the project is now moving forward with protocol development. Thank you to everyone who participated in this opportunity!
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Sharing Insights & Experiences of Life with CF Through the Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 125 members who have written 276 posts since the CF Community Blog launched!
Other Recent Publications
Additional publications that highlight the voice of the CF community include:
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