Community Voice: Monthly Results Update
March 2022 Edition
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Dear Community Voice Member,
Welcome to the March 2022 edition of Monthly Results Updates!
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.
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Community Voice: 2021 Year in Review Report
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Community Voice members continue to be an unstoppable force.
In 2021, members got involved in numerous efforts in CF research and care while also continuing to connect with and support others in the CF community. Thanks to you, the Foundation continues to gain momentum towards a cure.
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We are excited to share the Community Voice: Year in Review Report! In this report we reflect on the biggest achievements from the past year and share:
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How the group has grown and its impact on cure, care, and community efforts
- Testimonies from CF Foundation staff and researchers about how essential your participation is in advancing their work
- A look into the priorities that our team will continue to focus on in 2022
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!
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The Compass program recently conducted a recruitment for adults with CF to join its advisory board, which provides guidance and community perspective relating to Compass operations, strategy, outreach, and projects. The committee sent out a call for applications through Community Voice to find members with a variety of different experiences and expertise and received nine quality applications. We are excited to congratulate the new members below who will be joining four other Community Voice members as a part of this group for a two-year term!
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| Genetic Based Therapies Focus Groups
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Genetic therapies such as RNA therapy, gene therapy, and gene editing hold the potential to treat the underlying cause of the disease for all people with CF, regardless of mutation. To better understand the community’s knowledge, perceptions, and needs regarding genetic therapies, 25 adults with CF and parents of people with CF participated in three focus groups to share their insights. Findings from these focus groups revealed that while many people were excited about these new potential therapies, there are clear gaps in communication and opportunities to improve educational content on genetic therapies and clinical trials. As a result, the Foundation hosted a series of educational webinars in English and Spanish (now available on YouTube) and are developing several new resources, including an infographic on genetic therapy, a glossary of key terms, and a list of important questions to ask your research team when considering participating in a genetic therapy clinical trial. Thank you to every Community Voice member who has helped played a key role in informing this work. Keep an eye out for future opportunities surrounding this topic!
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Gastrointestinal Treatment Simplification Survey
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A team from the Seattle Children's TDN Coordinating Center conducted a survey with adults with CF and parents in Community Voice to assess the need for researchers to evaluate the safety of withdrawing gastrointestinal medications for those taking highly effective cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies. Results from the survey were presented to members of the TDN, Clinical Research Scholars Program, and the CF Foundation to help determine whether a study should be designed on this topic. The research team is applying for a grant to study the safety of withdrawing acid suppressive medications -- particularly proton pump inhibitors -- and are also in the process of writing a manuscript about these findings to submit to Pediatric Pulmonology later this year. Thank you to everyone who participated in the survey!
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“Hearing from Community Voice members granted us the opportunity to better design a study that will allow us to create evidence around the ability to safely stop acid suppressive medications and make a true impact on the community we aim to serve. Collaborating with people with CF and their loved ones through Community Voice is a true testament to the meaning of co-production.”
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- Meghana Sathe, Pediatric Gastroenterologist and Co-Director of the CF Clinic and Therapeutics Development Center, Pediatric Program at the University of Texas Southwestern
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CF Genetic Counseling Feedback Survey
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Genetic counseling provides critical information about how genetic conditions might affect a person or their family and is essential for parents of infants who have received a positive CF newborn screening (NBS) result. To understand and address the challenges in accessing genetic counseling, an expert workgroup of CF physicians, genetic counselors, NBS lab directors, researchers, and parents of children with CF came together to develop consensus recommendations. We are pleased to share that the recently published article, “Genetic counseling access for parents of newborns who screen positive for cystic fibrosis: Consensus guidelines” is now available in Pediatric Pulmonology.
These recommendations address questions and concerns about CFNBS, CF genetics, and access to genetic counseling services in care centers where NBS follow-up evaluations (including sweat tests) are performed. The workgroup’s next steps include defining core components of CFNBS genetic counseling and implementing ongoing education efforts with this resource. Thank you to everyone who participated in this project, including 52 members of Community Voice and those on the Foundation’s Guideline Steering Committee!
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Guidance, Action, Projection Meeting Recruitment
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Last month, the CF Foundation held the Guidance, Action, Projection (GAP) meeting, which brought together experts to help determine the most needed research on CF complications and discuss the Foundation's funding strategies to attract researchers to study those topics. The meeting garnered participation from more than 55 attendees including CF Foundation staff, clinicians, researchers, and nine people with CF and parents of people with CF in Community Voice. In June, the Foundation will publish an updated list of areas of encouragement for 2023 clinical research program funding opportunities along with a handful of new funding opportunities targeting special topics, such as research into health disparities and strategies for growing clinical research communities. Thank you to Community Voice members Andrew Silverman, Eliza Callard, Gabriella Castillo, James Lawlor, Jessica Morrissey, Kori Tolbert, Rachel Hill, Shelby Luebbert, and Sylvia Mazuera who attended, as well as seven other individuals who participated offline to help inform the workshop and this work!
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A team from Seattle Children's TDN Coordinating Center is conducting the OUTREACH study, which will compare clinic versus home spirometry. Community Voice members have played a key role in informing this study, including participating in a meeting to shape the study’s design, sharing their perspectives and experiences about using home spirometry devices, and sharing feedback on the study’s informed consent form. We would like to thank everyone who has been involved in this project, including the following members below who serve on the OUTREACH study’s group. Stay tuned for an update on this project in the near future!
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STOP-360 Study Survey & Focus Groups
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Community Voice members have been involved since the beginning of the STOP program, one of the largest and longest ongoing programs that have utilized community feedback since its inception. The program is now executing the STOP-360 study, which examines best practices for pulmonary exacerbation (PEx) treatment and management for people with CF.
Last year, adults with CF and parents of adolescent children in Community Voice participated in a survey to help inform two potential study designs. The first study focused on whether one or two types of antipseudomonal antibiotics would provide treatment benefit. The second study aimed to see if treating PEx at home could be improved so that outcomes (like lung function) are comparable to when people are treated in the hospital. Between 80-90% of respondents felt that each study was important for people with CF, which has led to the development of a new protocol that is currently being reviewed by the CF Foundation’s scientific review committee.
Most recently, Community Voice members also participated in two focus groups to provide additional insights into treating PEx at home; its impact on aspects such as sleep, nutrition, mental health, chest therapy, and life responsibilities; and the types of support that would be helpful. This information is being used to design interventions to improve outcomes for PEx’s treated at home. Thank you to everyone who has participated so far and stay tuned for another update on this project!
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UPCOMING & OPEN OPPORTUNITIES
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Join us Thursday, April 7 and Saturday, April 9 for ResearchCon. During this free, online event you can learn the basics and the latest around cystic fibrosis research and science. No matter where you are in your journey and regardless of your level of experience with research, this event is for you. There will be real-time Spanish audio translation, as well as English closed captioning during the event.
Check out the full agenda and register today!
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| Keep an eye out for upcoming opportunities in the next few weeks, such as to express interest in joining the Education Committee and share your perspectives and experiences on topics such as well-being, sexual and reproductive health for men, and more.
In the meantime, check out some open opportunities to participate in today!
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| Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 151 members who have written 339 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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