Monthly Results Update

Dear Community Voice member, 
Welcome to the September 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.
Visit cff.org regularly for the latest resources and updates from the Foundation regarding COVID-19. 
Advanced CF Lung Disease Community Working Group
The CF Foundation recently established the Advanced CF Lung Disease (ACFLD) Community Working Group to guide the development of educational content. This group will be informing the development of educational content and communications to support the management of ACFLD based on the Advanced CF Lung Disease Clinical Care Guidelines. More than 1,200 invitations to apply for a position on the working group were sent to adults with CF in Community Voice. The group received a broad pool of candidates and after careful review of each application, we are pleased to congratulate twelve Community Voice members who will serve on this group over the next year!
Andrew O'Shea
Andrew Silverman
AnnMarie Ockenfels
Brenna Liana
Christopher Raybuck
Jennifer Eisenmann
Jennifer Weber
Kevin Wohlers
Lauren Jones
Linda Farrington
Meagan Tenyer
Solana Cortez
Gastrointestinal Treatment Simplification Survey - Update
A team from the Seattle Children's Therapeutics Development Network (TDN) Coordinating Center conducted a survey to assess the need for researchers to evaluate withdrawal of gastrointestinal medications for people with CF on highly effective modulators. Results from this survey are currently being presented to members of the TDN, Clinical Research Scholars Program, and CF Foundation. A key finding revealed that there is a need to design studies that focus on simplifying regimens for acid suppression and pancreatic enzyme replacement therapy for those on highly effective modulators. This finding is also informing a potential new study that will help determine how to safely decrease/stop acid suppressive medication while optimizing time constraints. Thank you to all who participated in the survey, and please stay tuned for an update on this project in the future!
Home Sputum Collection Survey
As interest in telehealth medicine has grown due the COVID-19 pandemic, it has become increasingly important to hear from the community regarding the use of telehealth to increase access to care and reduce barriers to clinical trial participation. A team from the Seattle Children's TDN Coordinating Center conducted a survey to understand what sputum production currently looks like in the CF community and if collecting sputum outside of a clinic setting (such as at home) is a suitable option. Findings from the survey revealed that there is willingness to collect sputum samples at home for research purposes. These results will help researchers understand if sputum can continue to be used to identify bacteria in the airway for clinical care or research studies, as well as inform the design and progress of current and potential studies. Thank you to everyone who shared their valuable insights on this important topic!
Back to School Resources Review 
As schools transitioned back to in-person learning, the CF Foundation gathered feedback from parents of school-aged children with CF to inform a variety of messages related to back-to-school challenges. These messages focused around topics such as explaining the difference between CF and COVID-19, requesting school accommodations, and transitioning into a school routine. Thanks to the feedback from the CF community, this project is providing a multi-faceted impact by:
  • Informing a social media campaign to help validate the concerns parents have about school and encourage them to turn to their care teams as a resource.
  • Supporting care teams by providing handouts about returning to school, school routines, and maintaining emotional wellness to help guide discussions with their patients & families.
  • Updating the school section on the Foundation’s COVID-19 Community Questions & Answers webpage to reflect trending questions.
  • Piloting a roundtable discussion with pediatric staff members at Vanderbilt University, Community Voice member Ginger Birnbaum, and the CF Foundation Tennessee Chapter to develop a toolkit for care teams to use in partnership with local CF Foundation chapters.
Thank you to everyone in Community Voice who participated in this project! If you are a parent of a child with CF, please make sure to check out the Foundation’s COVID-19 Community Questions & Answers webpage for more information and resources available in English and Spanish.
Open Opportunity:
Infection Research Initiative Survey
The CF Foundation is conducting a survey on the Infection Research Initiative (IRI) to better understand how we communicate infection research, assess whether the priorities of the IRI should be reconsidered, and inform changes to the IRI in the future. We would like to hear from all people with CF, parents of children with CF, and their families.

Results from the survey will be presented at the 2021 Infection Research Steering Committee meeting and will be used to shape the initiative's priorities in the near-term and future beyond 2023. If you would like to participate in this anonymous, 7–9 minute survey, please click on the button below by Monday, October 4th at 11:59 p.m., ET.
Complete Survey
Sharing Insights & Experiences Through the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 142 members who have written 320 posts since the CF Community Blog launched. 
Interested in sharing your story? The CF Community Blog wants to hear from you.
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