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, 
Happy new year and welcome to the December 2020 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 Opportunity:
Women's Sexual and Reproductive Health Survey 
Investigators from Cardiff University are conducting the CF PROSPER study to learn how women living with cystic fibrosis make decisions about having children. The survey focuses on the decision-making process as well as the perception of how pregnancy/parenting has affected the health of women with CF. The results will be used to help develop a decision support tool that can be used by healthcare professionals and women with CF interested in starting/expanding a family. If you are a woman with CF ages 18 or older and interested in participating in this survey, please click on the button below by Sunday, January 31.

Please note that the CF Foundation is not involved in this project beyond its dissemination.
Complete Survey
CF-Related Diabetes Multi-phased Project (Final Update)
CF-related diabetes (CFRD) affects over 35% of adults with CF and is consistently ranked as a high-priority for research by the CF community. A research team of endocrinologists partnered with the CF Foundation to conduct a multi-phased project to learn more about the community’s priorities for future endocrine research, needs regarding CFRD-related education, and perspectives on CFRD devices and technologies. Thanks to the help of 120 members of the CF community who participated in the survey, the team learned several key insights regarding CFRD, including that:
  • Education is the cornerstone of diabetes management, but current educational practices are not meeting the needs of the CF community. Nineteen percent of respondents did not learn about CFRD until receiving a diagnosis and had differing opinions about whether they preferred to learn about CFRD from their pulmonology team or endocrinology team.
  • The use, preference, and reasons for discontinuing diabetes technologies such as continuous glucose monitors (CGM) and insulin pumps varied, despite the benefits of improving quality of life and diabetes control (in Type 1 Diabetes). The use of CGMs were more favorable compared to insulin pumps however cost, insurance coverage, and not wanting a device attached to the body were common reasons why patients discontinued use of CGMs.
The research team is currently developing educational resources, tools, and future studies to help address these challenges and improve life outcomes for people with CFRD. More information on the impact of this study will also be available in the upcoming Community Voice: 2020 Year in Review Report. Thank you to every Community Voice member who took the time to share their insights on this project!
Lung Transplant Survey & Tool
Being well-informed and feeling prepared is crucial formaking decisions surrounding lung transplantation, a treatment option that can extend and improve the quality of life for a person living with cystic fibrosis. Through the help of 107 Community Voice members, researchers at the University of Washington gained valuable insight into the CF community’s perspectives and experiences surrounding lung transplantation, including their information needs and communication preferences. In addition to these insights, the research team is currently inviting individuals who participated in the survey to serve on a work group to inform and test a decision support tool that will help prepare individuals with CF to have discussions and make decisions about lung transplant as a treatment option. Thank you to everyone whoparticipated in the survey!
Medical Traumatic Stress Expert Review Panel
For people with CF, it is common to experience frequent appointments, tests, and procedures as part of their medical care. Led by a researcher from the University of California, a panel of CF care providers, researchers, psychologists, and community representatives are advising the development of CF criteria and a survey for medical traumatic stress. Medical traumatic stress (MTS) is defined as the psychological and physical symptoms that patients and family members can have in response to scary medical experiences, which are not yet fully understood in patients with chronic illnesses, including CF.

The role of the expert review panel is to give feedback on the process of criteria and survey development, and to evaluate the tool for validity, generalizability, and feasibility. The group received nine applications for their call of interest to serve on this panel. We are excited to congratulate David Davison and Sylvia Mazuera who were selected to serve on this 3-year panel!
David Davison
Sylvia Mazuera
Clinical Research Committee - Community Reviewers
Several members of Research Voice have served as community reviewers for the Clinical Research Committee (CRC), which funds academic research projects led by CF clinicians and researchers. The projects are investigator-initiated, meaning that the studies are designed and conducted by CF researchers. These community reviewers help to provide feedback on the feasibility and relevance to people with CF for each study proposal to help make a funding decision. We would like to congratulate Alan Gabor, who will be joining 17 other community members to serve on the CRC and help review clinical research grants for the upcoming spring cycle!
Access Steering Committee
The Access Steering Committee works to illuminate access and coverage challenges faced by the CF community, provide input on programmatic work to tackle barriers to care, and collaborate on research efforts to better understand access challenges. This year, the committee sent a call for applications to over 850 Community Voice members and received 14 competitive applications. We are pleased to announce the following four Community Voice members who will be joining two other community members to serve on this committee for a 2-year term!
Ed Canda
Lynda Griffin
Shelby Luebbert
Misty Roussa
Sharing Insights & Experiences Through the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 133 members who have written 296 posts since the CF Community Blog launched. Also, make sure to check out the top 10 blog posts of 2020 - seven of which were written by members! 
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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