Monthly Results Update

Dear Community Voice member, 
Welcome to the February 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.

Community Voice: 2019 Year in Review Report
2019 marked a huge milestone for Community Voice as it marked five years since the group was established! Thanks to this hardworking group and all the insights you’ve shared with us, our collective community has been able to accomplish so much in CF care, research, and more. 

In case you missed it, don’t forget to check out our 2019 Year in Review Report! In this report we reflected on the biggest moments of 2019, plus shared:
  • How the group has grown and its impact on countless projects and initiatives since 2014
  • Testimonies from members about what it means to get involved in the Foundation’s work
  • Priorities for 2020
Thank you for being an essential partner in our shared mission to help provide all people with CF the opportunity to lead long, fulfilling lives. We look forward to another great year ahead!

Publication Announcement:

Care of Individuals with Advanced CF Lung Disease Guidelines
We are pleased to announce that the "Care of Individuals with Advanced Cystic Fibrosis Lung Disease: Cystic Fibrosis Foundation Consensus Guidelines" is now available on The Journal of Cystic Fibrosis’ website. Several members of Community Voice were involved in the development of these guidelines by serving on the committee and providing additional feedback during the public comment period. Developed to be used by care centers, these guidelines provide 23 recommendations for caring for individuals with advanced CF lung disease. Stay tuned for more opportunities on this topic in the near future. If you're interested, all of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.

Study on Pulmonary Exacerbations in Children with CF

(STOP-Peds)
CF researchers have been working with the Foundation to develop a national study on the outpatient treatment of pulmonary exacerbations with oral antibiotics in children with CF. In 2019, caregivers in Community Voice participated in a survey to help researchers understand the community’s interest on this topic and what key research questions needed to be answered. Based on the survey’s results, the researchers then developed a draft study protocol and conducted focus groups to determine whether the study was designed in a way that parents feel more comfortable about their child’s participation. Through those focus groups, the researchers:
  • Determined important signs and symptoms of a pulmonary exacerbation
  • Modified the study protocol to include only one visit at the end of the study and remove the requirement for an in-person research visit at the time of illness
  • Enhanced their communication strategy to reduce the likelihood of undertreatment of worsening symptoms in study participants and improve their comfortability during the study’s randomization stage
Thank you to everyone who participated in these projects to help inform this study, which is anticipated to begin enrollment through the Clinical Trial Finder in Fall 2020.

Women's Reproductive Health Focus Group
As new treatments help people with cystic fibrosis live longer and healthier lives, more women with CF are also considering if, when, and how to have children. Investigators at the University of Pittsburgh conducted a series of focus groups of women with CF to discuss what is important to them when considering their reproductive choices and to give feedback on how to best present the information. Findings from the focus group series are currently being used to develop the decision aid tool. Thank you those who participated in this project! 

Online Registration Open for Volunteer Leadership Conference
Join us virtually March 13 - 14 for our 17th annual Volunteer Leadership Conference (VLC) to hear success stories from volunteers from across the country, the latest medical and scientific updates, and how together, we are entering a new era in CF. Register for the livestream today! 
Register for Livestream

Writing for the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 103 members who have written 257 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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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