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The CF Foundation has been closely monitoring the spread of 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.
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Dear Community Voice member,
Welcome to the April 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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Telehealth and Remote Monitoring Workshop
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Last month the CF Foundation hosted a two-day virtual Telehealth and Remote Monitoring Workshop that brought together clinicians, researchers, and community members to discuss the use of telehealth and remote monitoring and how they can be used to enhance CF care and research. The key themes that emerged from the workshop were:
- Virtual access to care and research, including potential implications for underrepresented groups
- New models of CF care that include telehealth
- Standardized remote measures/endpoints for both care and research
- Effective education and training
- Potential outcomes to measure success as we consider long-term implementation of telehealth and remote monitoring
The next steps from the workshop will include aligning with related work currently underway as well as planning workgroups and research to address key questions. Thank you to Community Voice members Solana Cook, Meagan Tenyer, Ginger Birnbaum, Sharon Cray, Jennifer Kyle, and Dan Schulke who attended and provided real-life insight into this effort. Check out Dan’s spotlight below to learn about his experience attending the workshop!
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Dan Schulke
We would like to introduce you to Dan Schulke, an adult with CF who joined Community Voice in November 2018 and recently attended the Telehealth and Remote Monitoring Workshop.
Tell us about your interest in this topic - why did you decide to apply to participate?
I’ve spent several years receiving care from my CF provider and care team via telehealth. I was very excited to try and contribute what I have learned through my own experience, hear about how other clinics were using telehealth, and think of new ways to work with care teams virtually.
What was your experience as an attendee like?
It was fantastic! I really enjoy the interactions between people with CF and the clinical and research teams. Everyone was very receptive and respectful of all viewpoints and was there to help build the best care model for people with CF!
How do you think this workshop will impact the CF community in the future?
I’m really excited and hopeful that the research that will come out of this will lead to new, more personalized approaches to regular follow-up visits with care teams, particularly in the time of highly effective modulators.
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The Voice of the CF Community Throughout ResearchCon 2021
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The third annual ResearchCon 2021 was also held earlier this month and brought CF researchers, clinicians, and community members together to share the latest information on research studies and incorporate personal experiences and new perspectives on important topics in CF science and care. The impact of Community Voice members was highlighted during the second keynote, “The Building Blocks of the CF Foundation’s Research Portfolio: From Community Input to Choosing What to Fund”, where members helped identify what topics should be addressed by panelists during the session. The work of Community Voice members was also acknowledged during sessions about health disparities in CF research and care, CF-related diabetes, advanced CF lung disease, and the gastrointestinal tract. Sessions from ResearchCon are now available on YouTube and select sessions will be available with Spanish captions in May.
Additionally, we would like to thank the speakers, panelists, and moderators who encouraged event attendees to join Community Voice. We are pleased to welcome more than 30 new members to this group and look forward to working with you all!
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Genetic-Based Therapies Survey
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The CF Foundation conducted a survey to better understand the community’s perspective on genetic-based therapies consisting of mRNA therapy, gene-editing, and gene therapy. As research in this area increases, it is important to learn more from people with CF and their families, particularly those with nonsense and rare mutations, and understand their knowledge of this topic and willingness to participate in genetic-based therapy clinical trials. More than 500 individuals in the CF community including 135 Community Voice members completed the survey. Click here to view the survey results, which are now being used to inform communications and education efforts and are being shared with researchers to help shape clinical trials and other research in this space. Thank you to every Community Voice member who participated!
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Food insecurity --the lack of consistent access to affordable, nutritious food to stay healthy and active -- affects about one-third of the CF community. The Foundation’s CF Food Security Committee conducted a survey to learn more from people with CF and their families who are facing food insecurity and identify ways to support the CF community. After receiving 140 responses, the committee learned several key insights including:
- Most people are familiar with food insecurity (about 85% of respondents) so while continuing education is important, it is not the greatest need for the CF community right now
- The CF community turns to community resources (for example, a food pantry at a local church) or their CF care team social worker when they face food access challenges
- Gift cards, food boxes, and food pantries are the most preferred resources to help meet their needs
Based on these insights, the committee will continue creating tools, guides, and materials to support clinicians to meet the needs of the CF community, including prioritizing the development of resources for care centers on how to start a food pantry or food box program. Thank you to every Community Voice member who participated in this survey!
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Recording Available: Supporting Your Adolescent’s Mental Health During COVID-19
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In case you missed it, click here to watch the full recording of the Supporting Your Adolescent’s Mental Health During COVID-19 webinar. Hear from experts who discuss the range of emotions kids and teens may be experiencing during this time, strategies to support a child’s emotional wellness, and tips for talking to children about their emotions.
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Open Project for Parents of 6-11 year old Children with CF
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Both sleep and sinus problems are common among adults with CF. A research group from the Children’s Hospital of Richmond at Virginia Commonwealth University is working to learn if children experience these problems and whether they may be affected by treatment with Trikafta. Parents of children with CF aged 6-11 years can participate in an anonymous survey regarding the impact of Trikafta on their child’s experience with sinus symptoms and sleep disturbance. Participants can access the 5-10 minute survey here, which will direct them to several brief demographic questions and two standardized questionnaires: the Children’s Sleep Habits Questionnaire and the Sino-Nasal Outcomes Test-22. These will be completed through REDCap, which is a secure, web-based application designed to support data capture for research studies.
Parents will be asked to repeat these two surveys one month after their child starts Trikafta, to help the researchers evaluate whether any changes have occurred after starting the medication. The pre-Trikafta and post-Trikafta surveys will be linked in REDCap, but parental email addresses will not be linked to survey responses. After completion of the post-Trikafta surveys, parents will be issued a $25 e-gift card as a thank you for participation.
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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 139 members who have written 308 posts since the CF Community Blog launched.
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