Cystic Fibrosis Foundation
Dear Community Voice member,
Welcome to the December 2021 edition of 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. 

Announcement

Compass is AIRS accredited!

The CF Foundation Compass program recently received full accreditation from the Alliance of Information and Referral Systems (AIRS) which solidifies its premier quality as an effective information and referral service for the CF community. Learn more about how Compass can help you and your family here.   
LEARN MORE

Protocol Review Committee

The CF Therapeutics Development Network (TDN) conducted a recruitment for adults with CF and caregivers of children with CF under 12 years old to join the Protocol Review Committee (PRC), a committee that critically reviews clinical research study protocols before they are conducted. The recruitment aimed to bring community member representation to provide feedback on issues such as visit schedule, protocol burden, procedures, and potential risk. The TDN received 18 quality applications and we are excited to congratulate eight new members who will join this group for a three-year term!
Amanda Merrill
Andrew Silverman
Art Brace
Caroline Buckel
Kate Johnson
Kayleena Ronksley
Kimberly Dunbar
Michele Heath
Erida Kazmaj
Ian Tisdale

CF Lung Transplant Consortium Steering Committee

The CF Foundation's Lung Transplant Consortium (CFLTC) Steering Committee conducted a recruitment to add community members with post-lung transplant experience to their group for a 2-year term. This committee establishes a committed group of lung transplant centers, promotes relationships between CF and lung transplant care teams, provides a forum to exchange ideas about the science of lung transplantation, and maintains the CFLTC Biorepository and Patient Registry. The consortium reviewed 17 competitive applications and we are excited to congratulate two new members who will serve as a part of this group!

STOP2 (Standardized Treatment of Pulmonary Exacerbations) Study Results

Results from the Foundation-funded STOP2 study (Standardized Treatment of Pulmonary Exacerbations) found that a longer course of IV antibiotics was not more effective than taking antibiotics for a shorter period of time when treating pulmonary exacerbations in either rapid or slower responders. Ultimately, this study will help reduce the time people with CF spend on IV antibiotics, hopefully leading to fewer side effects and a lower risk of antibiotic resistance.
Community Voice members have been involved since the beginning of the STOP program, which has been one of the largest and longest ongoing programs that have utilized community feedback since its inception. Caregivers participated in the STOP-Peds study, where researchers conducted a national survey to understand the community’s interest surrounding outpatient treatment of pulmonary exacerbations with oral antibiotics in children with CF as well as what key research questions needed to be answered.
Adults with CF and parents of adolescent children also participated in a survey for the STOP3 study, which examines best practices for pulmonary exacerbation treatment and management for patients with CF. Participants from this study will be invited to participate in a follow-up focus group opportunity in early 2022. Thank you to everyone who has helped inform this important work!
VIEW STOP2 STUDY RESULTS

Exercise & Airway Clearance Survey

A team from the University at Buffalo conducted a survey with adults with CF, caregivers of children with CF, and clinical care providers to learn about their perspectives and practices of exercise and airway clearance in the post-CFTR modulator era. The results, which were presented at the 2021 North American CF Conference, revealed that:
  • Providers and community members feel similarly that exercise can substitute partially for airway clearance
  • Taking CFTR modulators did not change the opinion of the relationship between exercise and airway clearance in more than half of providers and people with CF who responded
  • Nearly 40% of providers have not recommended reducing airway clearance although their patient is on a highly effective CFTR modulator
These results are helping CF clinicians and researchers understand the community's perspective on exercise and airway clearance regarding altering treatment plans after beginning a CFTR modulator therapy. Additionally, the research team plans to use these results to inform quality improvement projects on exercise and nutrition/obesity in the coming year. Thank you to everyone who participated in this survey!
VIEW STUDY RESULTS

Food Security Survey - Update

With food insecurity affecting about one-third of the CF community, the Foundation’s CF Food Security Committee conducted a survey in early 2021 to identify ways to help support the CF community. The insights from this project have led to supporting clinicians implement new interventions within their care center by providing them tools like this "Unique Interventions for Food Insecurity" guide. Thank you to every member who participated in this survey and stay tuned for another tool on food pantries!
You can read more from a Community Voice member about what it’s like to experience food insecurity as a person with CF.

Sharing Insights & Experiences Through the CF Community Blog

Check out this recent blog post by a Community Voice member! Community Voice currently has 145 members who have written 327 posts since the CF Community Blog launched. 
Interested in sharing your story? The CF Community Blog wants to hear from you.

Impact of pandemic on cf care
In December, the Journal of CF published a supplement which includes a number of articles around the impact of the COVID-19 pandemic on the care received by people with CF.

Upcoming & open opportunities
Keep an eye out for upcoming leadership opportunities in the next few weeks to express interest in joining the Compass Advisory Board and the CF Adult Advisory Council! In the meantime, check out some open opportunities to participate in today.
OPEN OPPORTUNITIES
 
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