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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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Boehringer Ingelheim's CF Research Program
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Boehringer-Ingelheim, a research-driven pharmaceutical company that has several drugs in the early stages of development to treat cystic fibrosis, is developing a new CF research program. To help ensure their program is patient-centric, adults with CF and caregivers in Community Voice shared valuable insights of their experience living with cystic fibrosis every day. Members also shared their experiences with pulmonary exacerbations and the overall treatment and disease burden of CF. Through those focus groups, the researchers:
- Gained insight into the lives of people living with CF and the needs of the community, which will be used to help steer future drug development studies
- Determined the early signs and symptoms of pulmonary exacerbations such as increased or changed cough, increased fatigue, and change in mucus which will be explored in future clinical trials
- Gathered feedback surrounding the minimization of hospitalizations and support of home care, and will investigate the period between unavoidable hospitalizations and the use of antibiotics, specifically intravenous antibiotics
- Developed an idea to work with patients and caregivers on an effort that focuses on the burden of CF and early exacerbation symptoms
Currently, these insights are being used to inform the early stages of the research program and the company’s approach to study designs. Thank you to the 51 Community Voice members who participated in this project!
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Recently the Compass program developed an advisory board to provide guidance on case management, strategy and operations, programs, and Compass program evaluation. This new group is a collaboration of care team members, Foundation staff, a representative from a community organization, and several people with CF and family members. To find members with a variety of different experiences and expertise, the committee sent out a call for applications to Community Voice and received nearly 20 applications. We are excited to congratulate Jennifer Ferguson, Joe Stackhouse, Kristina Robinson, Laurie Rogers, Lynda Griffin, Marissa Benchea, and Olivia Clark who will be joining this new and important committee!
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Mary M. Kontos Award Selection Committee
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The Mary M. Kontos Care Champion Award honors non-physician CF clinicians (nurses, social workers, etc.) who exemplify outstanding care to patients and families. This award is named after Mary Kontos, PNP, who was a CF nurse coordinator. In addition to her devotion to people with CF, she was a key care team member and regarded as a pioneer in advanced practice nursing that inspired a generation of CF nurses and care team members.
In hopes of including the patient and family perspective into the selection process, the award committee sent out a call for applications to join the group and received 11 heartwarming applications from Community Voice members. We are excited to share that Misty Roussa, a parent of a child with CF and Katherine Russell, an adult with CF, will join their group for a 2-3 year term. Congratulations Misty and Katherine!
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Ear, Nose, and Throat (ENT) Survey
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Since cystic fibrosis is a complex disease, many adults with CF receive otolaryngologic care, also known as ear, nose, and throat (ENT) care. To better understand the current scope of how people with CF receive referrals and treatment for ENT care, the CF Foundation conducted a survey with the CF community and CF care team members. The abstract of these findings were published in the International Forum of Allergy & Rhinology and are currently being used by the CF Foundation’s ENT Guidelines Committee to help develop clinical care guidelines to help standardize the diagnosis and treatment of disorders that affect the nose and sinuses.
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Real World Research Meeting - January 2020
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This past January, the CF Foundation hosted a meeting to discuss reducing treatment burden for people with CF. Six members of Community Voice attended this meeting both in-person and virtually to provide valuable insight into whether a potential study on this topic would be feasible for participants and could produce results that will be meaningful to the broader CF community. Please stay tuned for upcoming opportunities to share your feedback on specific questions related to this topic!
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Writing for the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 106 members who have written 268 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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