Community Voice: Monthly Results Update
November 2022 Edition
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Dear Community Voice Member,
Welcome to the November 2022 edition of the Monthly Results Updates!
In these digests you will learn about the impact Community Voice members are making through participation in recent opportunities. If you would like to read about past projects, browse previous editions.
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SDOH Document Review Group
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Despite significant advances in CF care, many people with CF and their families continue to face challenges maintaining their health and well-being which may be linked to social determinants of health (SDOH): the conditions in which we are born, grow, live, work, and age, and the fundamental drivers of these conditions. As we work to explore opportunities that address the impacts of SDOH, ongoing engagement with the CF community in these efforts continues to be a priority. Recently, members of Community Voice informed several new resources by providing feedback on the usability and helpfulness of content across a variety of topics, including employment, health insurance, internet, utilities, transportation, and a toolkit for clinicians about social risk factors. We would like to thank Brian Armstrong, Georgia Brown, Holly Grossenheider, Jordan Driggers, Kelley Garvin, Kristina Robinson, Leah Chase, Meagan Helmick, and 3 other members of the community for reviewing these materials. Please stay tuned for more updates in this area of work!
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| Janssen Study Feasibility Interviews
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During the Spring, the CF Foundation partnered with a pharmaceutical company to learn more about experiences living with cystic fibrosis and pseudomonas as well as ways to optimize future potential clinical trial schedules. As new medications continue to be developed and rely on clinical trial participation, it is essential to understand how to make individuals more comfortable and ease the burden of required tests/evaluations. As many of you know, FDA requirements for new drugs can include many medical tests (e.g., pulmonary function, bloodwork, sputum collection) which are all very important but can be burdensome for clinical trial participants. The research conducted identified the optimal test collection schedule to obtain insights while minimizing the impact on participants.
The research revealed the importance of at-home testing/sample collection, shorter wait times at the hospital and care centers, and need for more financial assistance with travel and meals while participating in a clinical trial.
Janssen would like to thank all who took the time to share their experiences and thoughts on the clinical trial study design. Together they hope to develop new drugs that will make a difference in cystic fibrosis in the future.
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Lung Transplant Tool Usability Testing Working Group
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Lung transplantation can extend and improve one’s quality of life, however many potential candidates often express uncertainty about this treatment option. Researchers from the University of Washington conducted a survey to better understand information needs and communication preferences around the topic of lung transplant. Thanks to the support of people with CF and caregivers in Community Voice, the feedback gathered informed the creation of “Take On Transplant,” a web-based education tool to help empower and prepare people with CF for conversations and decisions surrounding lung transplantation. Results from this project were presented during a workshop at the North American Cystic Fibrosis Conference and also published in the Journal of the American Medical Informatics Association and Journal of Cystic Fibrosis (Poster 148). Next steps for this project include continuing to explore, expand, and analyze the data to improve the educational tool. Thank you to everyone who participated in this project!
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In the Month of November, We Celebrated -
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Native American Heritage Month
Community Voice is proud to recognize the month of November as Native American Heritage Month and celebrate the rich historical legacy, achievements and contributions of the Native/Indigenous Americans community. This celebration aims to highlight the importance of representation of Native/Indigenous voices in the CF community and the diversity within Community Voice membership.
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UPCOMING & OPEN OPPORTUNITIES
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The Cystic Fibrosis Foundation is hosting an NACFC Highlights Webinar from 7-8 p.m. ET on Tuesday, Dec. 6. The webinar will include an option to listen to a live Spanish translation. Drs. Jennifer Taylor-Cousar and Raksha Jain will present the latest developments in research and care as well as answer audience questions. Among other news, participants will hear about the results of the Simplify study, which focused on whether it was safe for people with CF to stop inhaled hypertonic saline or dornase alfa (Pulmozyme®) while taking Trikafta®. If you are unable to watch live, all those who register will receive a link to the webinar recording after the event.
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as Social Determinants of Health (SDOH), Community Voice End of Year Member Survey, and more. In the meantime, check out open opportunities to participate in today!
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| Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 158 members who have written 362 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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