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 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, browse previous editions.
Success with Therapies Research Consortium Steering Committee
The Success with Therapies Research Consortium Steering Committee is responsible for facilitating the clinical study of behavioral interventions to help sustain daily care and improve CF disease self-management while optimizing health outcomes and quality of life for people with CF. More than 600 invitations to apply for a position on the steering committee were sent to adults with CF in Community Voice. The committee received a diverse pool of candidates and after careful review of each application, we are pleased to congratulate Shelby Luebbert who will be joining four other Community Voice members on this committee to serve a three-year term!
Colorectal Cancer Screening Survey
Conducting regular colon cancer screenings are very important for people with CF, and the CF Clinical Care Guidelines recommends a colonoscopy as the only mechanism for colon cancer screening in individuals with CF who are over the age of 40 or who are over the age of 30 and post-transplant. The CF Foundation conducted a survey to better understand the community’s perspective on non-invasive stool-based testing as an alternative to a colonoscopy for early detection of colorectal cancer. As research in this area increases, it is important to learn more from people with CF and their families to understand willingness to participate in stool-based research trials. There was great enthusiasm for an alternative to colonoscopy for colon cancer screening in the CF community and valuable feedback was also given on the feasibility and clarity of instructions for stool-based testing. The survey results will help shape an upcoming clinical trial for non-invasive stool-based testing for colon cancer detection. Thank you to every Community Voice member who participated!
Publications Announcement:
Models of Post-Lung Transplant Care Guidelines 
We are pleased to announce that the recently published article, “Cystic Fibrosis Foundation Consensus Statements For The Care Of Cystic Fibrosis Lung Transplant Recipients,” is now available in the Journal of Heart and Lung Transplantation. Congratulations to Ray Poole who served on the guidelines committee, and to every Community Voice member who was involved in developing these guidelines. From participating in a survey to share your insights about the current practices, barriers, and ideal models of post-lung transplant CF care to providing additional feedback on the guidelines during its public comment period, thank you for working to comprehensively address post-lung transplant care needs and to improve quality of life for individuals with CF. 
Satisfaction and Effectiveness of Opioid Pain Management Among Adults With Cystic Fibrosis: A Mixed Methods Study
We are pleased to share that “Satisfaction and Effectiveness of Opioid Pain Management Among Adults With Cystic Fibrosis: A Mixed Methods Study” is now available in the Journal of Cystic Fibrosis. Pain is estimated to affect 42% of adolescents and 77% of adults with cystic fibrosis, but there is insufficient evidence and lack of clinical guidelines addressing pain management strategies, including what role opioids have in treating pain in CF. Researchers at Johns Hopkins University conducted a survey to better understand how people with CF currently manage pain and ways they would like their pain to be managed. More than 270 individuals participated in the survey, and the results are now being used to support the need for guideline-driven clinical practice standards, including the role of opioid medications for chronic pain management in CF. Thank you to every Community Voice member who participated!
Perceptions of Diabetes Technology Use in Cystic Fibrosis-Related Diabetes Management 
We are pleased to announce that “Perceptions of Diabetes Technology Use in Cystic Fibrosis-Related Diabetes Management” is now available in Diabetes Technology & Therapeutics. CF-related diabetes (CFRD) affects more than 35% of adults with CF and is consistently ranked as a high-priority for research by the CF community. Last year, several members of the CF community took a survey and participated in focus groups to help a research team of endocrinologists in their multi-phased project about the community’s priorities for future endocrine research, needs regarding CFRD-related education, and perspectives on CFRD devices and technologies. The results from this project will be used to inform educational resources, tools, and future studies to help address challenges and improve life outcomes for people with CFRD. Thank you to every Community Voice member who took the time to share their insights on this topic!
Medication Access & Telehealth During COVID-19 Survey
Recent therapeutic advances in CF care have transformed the lives of many people living with CF, and it is critical that everyone has access to high-quality, specialized treatments and care -- regardless of their income, health insurance, or geography. A team from the University of Arizona conducted a survey with nearly 350 people with CF and caregivers to better understand how medication access and telehealth in CF care were affected during the COVID-19 pandemic. Findings from the survey revealed that most respondents reported that minimal/no contact services were offered at their local pharmacies such as deliveries or drive-throughs, and that telehealth (video and phone CF clinic visits) were convenient, effective, and sufficient in place of in-person visits. Click here for a brief overview of the findings, which will be presented as a poster presentation at the 2021 North American CF Conference and used to further support the importance of medication access and telehealth as a part of CF care.
Cannabis and Cannabidiol Use in CF Care Survey
Cannabis and cannabidiol (CBD) products are complementary medicines that are not a part of standard medical care for people with CF but have been a quickly rising topic of interest over the past few years. The University of Arizona research team conducted a survey with more than 400 people with CF and caregivers to better understand their perspectives regarding the use of these products in CF care. Results from the survey revealed that while respondents varied widely about their consideration and use of different types of cannabis and CBD products, nearly 70% believe that these products have potential health benefits. Click here for a brief overview of the findings, which will be used at the University of Arizona and University of Michigan CF care centers to better support care team members when navigating conversations about these products with their patients.  
Sharing Insights & Experiences Through the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 140 members who have written 316 posts since the CF Community Blog launched. 
Interested in sharing your story? The CF Community Blog wants to hear from you.
Manage your preferences | Opt out using TrueRemove™
Got this as a forward? Sign up to receive our future emails.
View this email online.
4550 Montgomery Ave Suite 1100 N
Bethesda, MD | 20814 US
This email was sent to .
To continue receiving our emails, add us to your address book.
powered by emma
Subscribe to our email list.