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The CF Foundation has been closely monitoring the spread of the coronavirus (COVID-19) to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation. Please note that participating in Community Voice opportunities is always optional.
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, click here to browse previous editions.
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Publication Announcement:
Models of Palliative Care Guidelines
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We are pleased to announce that the recently published article, “Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines,” is now available in the Journal of Palliative Medicine. Congratulations to Cade Hovater and Heather McCoy who served on the guidelines committee, and to every Community Voice member who was involved in developing these guidelines. From participating in a survey to share your insights about the importance of palliative care in CF, to providing additional feedback on the guidelines during its public comment period, thank you for working to comprehensively address palliative care needs and to improve quality of life for individuals with CF at all stages.
All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.
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Virtual CF Care (Telehealth) during COVID-19
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The Foundation conducted a series of interviews with Community Voice members to learn about their experiences with telehealth services during the COVID-19 pandemic, including access to and methods of telehealth services, the patient experience, access and adherence to remote monitoring devices, and long-term interest in telehealth beyond the COVID-19 pandemic. The purpose of these discussions was to gather insights that would help aid in an informed approach to addressing telehealth’s role in CF care and learn how the Foundation can best support care programs, patients, and families. Through those interviews, we learned that:
- Key advantages of telehealth include reduced travel to and from clinic, less time taken off work, reduced stress due to increased flexibility, and reduced risk of contracting COVID-19
- Disadvantages of telehealth include less quantitative data (no PFTs; vitals; weight and height measurements), lack of ability for care team to see the physical patient, and technology and broadband issues
- Access to home spirometers varies significantly
- The CF community is interested in continuing telehealth beyond the COVID-19 pandemic
These interviews informed a larger research survey that was sent to the CF community earlier this month to help inform the Foundation’s approach to telehealth moving forward. Thank you to everyone who participated in these interviews!
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Data Safety Monitoring Board (DSMB)
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The Cystic Fibrosis Foundation and Therapeutics Development Network’s Data Safety Monitoring Board works to protect the safety and welfare of people enrolled in CFF/TDN-sanctioned clinical trials by reviewing the initial study protocol and proposed safety monitoring plan. Once the trial has started, study data is monitored in real time to ensure the safety and merit of the clinical trial. The board recently sent out a call for applications to Research Voice members and after hosting interviews with top candidates, the committee leaders are excited to announce that four members will be joining physicians, statisticians, ethicists, and 10 other community members to serve on this multidisciplinary committee!
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Current CF community members on the Data Safety Monitoring Board:
Anne Cudaback, Emma D’Agostino, Julie Lazzara, Kerry Doyle-Shannon, Lauren Vignola, Lynne Korlewitz, Martha Weber, Rachel Cravens, Rebecca Murray, Ronnie Sharpe
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Although tremendous progress has been made in finding treatments and improving care for people with CF, food insecurity is a potential barrier that many in the CF community face. Through education, advocacy, and research, the CF Foundation’s Food Security Committee works to help raise awareness about food security while learning about and providing assistance to the CF community and care centers related to screening and intervening for families who are food insecure. To identify diverse perspectives surrounding this topic and better understand the impact of food insecurity on the CF population, the committee sent out a call for applications through Community Voice. We are excited to congratulate the five new members who will join existing Community Voice member Cade Hovater to begin their role this month!
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Two additional Community Voice members not pictured will also be joining the committee.
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Success With Therapies Research Consortium (STRC) Steering Committee
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To help address the challenges faced by people with CF and their caregivers, the Success with Therapies Research Consortium engages in clinical research studies of interventions focusing on daily adherence and disease self-management to improve optimal health outcomes and quality of life. Recently, a call for applications was sent through Community Voice for parents to apply for the STRC Steering Committee, which is the primary decision-making body for the STRC that works to oversee its overall operations and policies. After receiving several applications from qualified members, we are excited to congratulate Kirsten Kulik who will serve on this committee for a three-year term!
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Reminder:
Four Ways to Watch the North American CF Conference
Learn about the latest CF science and medical updates at NACFC, which opens October 7. This year there are four ways to watch: register for full access or the complimentary track, watch plenary presentations via Facebook Live, or view the post-event archives.
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Sharing Insights & Experiences of Life with CF Through the Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 130 members who have written 285 posts since the CF Community Blog launched!
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