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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 May 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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CF-Related Diabetes Survey & Webinar
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CF-related diabetes (CFRD) affects over 35% of adults with CF and has also been consistently ranked as a high priority for research by the CF community. Following the series of focus groups held with many Community Voice members, the research team is now conducting a survey in partnership with the CF Foundation to learn more about the community’s:
- Priorities for future endocrine research
- Needs regarding CFRD-related education
- Perspectives on CFRD devices and technologies
To take the anonymous 12 – 15 minute survey, please click the button below by Thursday, June 4th at 11:59 p.m., ET.
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Results from the survey will be used to help advance CFRD education and support and will inform research funding decisions. In addition, these results will also help inform the Foundation’s upcoming research webinar, Research Overview: Cystic Fibrosis-Related Diabetes, which will be held on June 9 at 6 p.m., ET. Learn about current and upcoming studies that community members have helped inform that aim to improve CFRD diagnosis and treatment. Plus, have an opportunity to ask your CFRD research-related questions during an audience Q&A. To register for the event, click here.
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CF Liver Disease Guidelines Survey
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The CF Foundation will be developing CF Liver Disease Guidelines for individuals with cystic fibrosis. If you have experience with liver, biliary, or gallbladder issues and would like to help shape these guidelines, we kindly request that you complete this anonymous, 10-minute survey by Tuesday, June 2. Your input will help advise the guidelines committee on the areas that mean the most to the CF community.
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Clinical Practice Guidelines are written to inform standards of care. All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.
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Women's Health Research Working Group & MAYFLOWERS Study Survey Review
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As people with CF continue to live longer and healthier lives, the CF Foundation recently established and recruited for the Therapeutic Development Network's Women’s Health Research Working Group. This group will help determine the gaps in knowledge around health issues that impact women with CF, identify future research priorities, and begin to develop the infrastructure needed to efficiently move these research priorities forward. After sending a call for applications to women with CF in Research Voice, we are excited to announce that Jacqui Sjoberg and Madeline Poranski will be joining this group for a two-year term!
Additionally, we would also like to thank six exceptional women in Research Voice who participated in a document review for the MAYFLOWERS study. Their valuable insights are being used to help inform the study’s design, which will be focused on investigating maternal and fetal outcomes in women with CF in the era of CFTR (cystic fibrosis transmembrane conductance regulator) modulators.
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Reducing treatment burden has consistently ranked as a top research priority by the CF community, especially as more people with CF gain access to effective CFTR modulators. In collaboration with the CF Foundation, CF researchers have developed the SIMPLIFY study which will assess which medications people with CF could potentially stop taking once they begin CFTR modulator therapy. Several Community Voice members played a large role in informing the study’s design by participating in a survey and document review which provided valuable insight into the CF community’s interests, needs, and preferences regarding this topic. We are pleased to announce that the survey’s findings have been published in the abstract, “Answering the call to address cystic fibrosis treatment burden in the era of highly effective CFTR modulator therapy,” which is now available on The Journal of Cystic Fibrosis’ website.
Thank you to every Community Voice member who helped shape this study which has begun enrollment through the Clinical Trial Finder.
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Clinical Trial Feasibility Survey Review
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Cystic fibrosis care and research has transformed with the approval of highly effective CFTR modulators that help address the underlying cause of the disease. While there are four modulators available for people with certain CFTR mutations, there is still a need to develop additional CFTR modulators and therapies that address the many remaining complications of CF. Researchers from the TDN Coordinating Center would like to thank the five members of Research Voice who provided valuable feedback on the “Clinical Trial Feasibility in the Era of Highly Effective Modulators” survey. As researchers continue to develop new therapies for CF, this survey will help inform study designs for alternative new therapies.
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Institute for Clinical and Economic Review’s Evidence Report
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The Institute for Clinical and Economic Review (ICER) is a nonprofit research organization that evaluates the clinical and economic value of treatments, medical tests, and delivery systems to help provide a foundation for a more effective, efficient, and just health care system. To help inform ICER’s evidence report on cystic fibrosis and the cost-effectiveness and clinical value of CFTR modulators, community members participated in a public comment opportunity to share about what it means to live with CF and their personal experiences of taking these therapies. Click here to view the report, which was developed to be used as a tool for health care decision makers to help improve patient outcomes and control costs.
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Writing for the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 111 members who have written 252 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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