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Opportunities to Provide Input

Cystic Fibrosis Foundation is seeking input on two aspects of life with CF: liver disease and CF related diabetes. The text of the announcements, including links to the related surveys, are presented below.

CF Liver Disease Clinical Care Guidelines

the CF Foundation will be developing CF Liver Disease Guidelines for individuals with cystic fibrosis. If you have experience with liver, biliary, or gallbladder issues, there are two opportunities to contribute to the development of these new guidelines.

1. Inform the Scope of Guidelines

To help shape these guidelines, we kindly request that you complete the anonymous, 10-minute survey. The survey asks about your experience with and practice patterns around liver, biliary, and gallbladder disease; you may choose not to answer any or all questions. The survey will be distributed to members of the CF care team, individuals with CF and their family members, and hepatologists. The survey will close on Tuesday, June 2nd, 2020.


2. Apply to join the CF Liver Disease Guidelines Committee

We are looking for multiple community members who have CF liver, biliary, or gallbladder experience to join the Guidelines Committee. This committee will review current literature to develop recommendation statements for liver, biliary, and gallbladder care in individuals with CF.

Click here to learn more about the expectations and goals of this group. To apply for a position on the CF Liver Disease Guidelines Committee, please click on the button below. This questionnaire will close on Tuesday, June 2nd, 2020. Leaders of the committee will review completed applications and select finalists based on the information provided.


CF-Related Diabetes

CF-related diabetes (CFRD) affects over 35% of adults with CF and is consistently ranked as a high-priority for research by the CF community.

1. Inform the discussion
Following the series of focus groups held with many Community Voice members, the research team is now conducting a survey in partnership with the CF Foundation to learn more about the community’s:
  • Priorities for future endocrine research
  • Needs regarding CFRD-related education
  • Perspectives on CFRD devices and technologies
To take the 15-minute anonymous survey, please click the button below by Thursday, June 4th at 11:59 p.m., ET
It’s important that we hear from the broad CF community on this topic. Please feel free to share this survey opportunity your social networks by using the buttons found at the bottom of this email!
2. Learn about research
Results from the survey will be used to help advance CFRD education and support, and will inform research funding decisions. In addition, these results will also help inform the Foundation’s upcoming research webinar, Research Overview: Cystic Fibrosis-Related Diabetes, which will be held on June 9th at 6 p.m., ET. Learn about current and upcoming studies that aim to improve CFRD diagnosis and treatment, an area of research identified by the community as a top priority. You’ll also have the chance to ask your CFRD research-related questions when registering or during the audience Q&A. To register for the event, please click here

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