Monthly Results Update

Dear Community Voice Member,

Welcome to the April edition of the Community Voice: Monthly Results Update!

In these digests you will learn about recent opportunities that Community Voice members have participated in, the feedback, ideas, and insights we gathered, and the next steps or impact of each project. If you have any questions or feedback on how we can improve these digests, please contact us at communityvoice@cff.org.

Best,

The Community Voice Team

2018 North American Cystic Fibrosis Conference (NACFC) Post-Event Survey

The 32nd annual North American Cystic Fibrosis Conference (NACFC) was held in October 2018. The primary focus of NACFC is for cystic fibrosis researchers and clinicians to learn about and collaborate around the latest advances in CF research and care. The Cystic Fibrosis Foundation also aims to identify ways to increase accessibility of medical and research information of interest to the community.

Based on community prioritization, livestreamed sessions from all 2018 NACFC plenaries and select symposia and workshops were made available online for community viewing. In addition, nearly all symposia and workshop slide presentations and accompanying audio (sync-to-slide) were made available after the conference. Click here to view 2018 NACFC presentations.

Following the conference, the CF Foundation conducted a survey to gather community feedback on accessing NACFC content. Click here to view the survey results, which were presented to the NACFC Program Planning Committee and are being used to inform this year’s conference planning. The main takeaways include that overall satisfaction with NACFC was high, and that livestream sessions and sync-to-slide are the least-viewed online content from the conference. The most popular sessions were interactive Facebook Live sessions created specifically for the community. We are using this data to help us continue to improve community access to medical and research information, including NACFC content.

Livestream voting for NACFC 2019 will take place in early May - keep an eye on your email inbox to participate.

Get Involved Section of cff.org Interviews & Survey

The CF Foundation recently redesigned the “Get Involved” section of cff.org – check it out here! Based on feedback and insights from many members of Community Voice, we created an improved experience that will make it easier than ever for all community members to participate in the fight for a cure in the way that works best for them, no matter their relationship to CF or the amount of time they have to give. A special thanks to everyone who participated in interviews and other research activities that contributed to the success of this project!

Spanish Language Community Review Committee

Fluent Spanish-speakers in Community Voice joined together to create the Spanish Language Community Review Committee, a group that reviews Spanish translated materials to ensure the content is coherent, culturally appropriate, and lay-friendly. Recently, they have reviewed materials about CF Peer Connect, the virtual one-to-one peer support program for people with CF and their family members age 16 and older, and Compass, the personalized service that helps people with CF and their families through insurance, financial, legal, and other issues they are facing. Click here to view the finished products which were shared last month during the Spanish education day at the University of California, San Francisco.

ENT Guidelines Committee

Recently, the CF Foundation built a committee to help develop guidelines on ear, nose, throat (ENT) care which will focus on topics such as pediatric sinus surgery, adult sinus surgery, and hearing in order to develop recommendation statements for ENT care. The committee leaders reviewed the 16 applications they received, and hosted interviews with top candidates to ensure that the committee would be comprised of community members with various perspectives and experiences. The group recruited two adults with CF and one parent of a person with CF, and the Guidelines Committee will kick off in June of 2019. CF Care Guidelines are written to inform standards of care. All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.

Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) Needs Assessment

The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) is a nationwide collaborative that aims to help shape the future of CF research surrounding sexual and reproductive health. Earlier this year, they conducted a needs assessment with Community Voice members to better understand the CF community’s knowledge and experience with patient-engaged research and assess the pros and cons of engaging patients and caregivers in this type of research. Click here to learn more about the assessment and the findings they collected, which will ultimately be used to help expand their patient-engagement methods to the greater CF community.

Success with Therapies Research Consortium (STRC)

Research Ideas Survey

To better understand the challenges faced by people with CF and their caregivers, the Success with Therapies Research Consortium (STRC) facilitates the clinical study of interventions to improve managing daily care and therapies to optimize health outcomes and quality of life for people with CF. A survey was conducted to gather research ideas from the CF community to learn how people with CF and their families manage daily life with CF.

Members of the committee identified themes that the community identified as priorities. Many of the themes identified are already being addressed in STRC studies, including topics such as telehealth opportunities and new apps to help the community manage their daily life. The committee will review the submissions and ask the community to rank ideas in order of priority, looking to identify one of the submissions as a potential new study.

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.

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