Cystic Fibrosis Foundation is seeking community involvement in the development of standards for two areas of care: post-transplant care and home IV treatments. The text of the requests from CFF are presented below. Please note the deadlines in each of the announcements.
Post-Transplant Care
The CF Foundation seeks your input on the draft of the Models of Post-Transplant Care for Individuals with Cystic Fibrosis White Paper.
A committee of cystic fibrosis and transplant health care providers, and an adult with CF collaborated to form consensus around this manuscript. It is my hope that you will add your input and feedback on this whitepaper and help guide CF care.
The draft manuscript and recommendations are available for public comment from February 9 until March 2, 2022 at 5:00 p.m., ET. We recommend that you first review the Models of Post-Transplant Care for Individuals with Cystic Fibrosis White Paper, and then click on the button to share your comments.
Thank you in advance for taking time to review and provide us with feedback on this very important aspect of CF care.
If you have any questions, please contact [email protected].
Sarah Hempstead, MS
Practice Guidelines Manager
Clinical Affairs, Cystic Fibrosis Foundation
Home IV Treatments
A recent clinical trial of pulmonary exacerbations showed that those treated in the hospital had better improvement in lung function and symptoms that those treated at home. As follow up to this study, we would like to conduct a focus group to better understand the following:
How can we make home IV treatment better for those patients who get treatment at home in order to improve outcomes (similar to those who receive some or all of their treatment in the hospital)?
What interventions would be deemed helpful to facilitate recovery from a pulmonary exacerbation and improve outcomes from home treatment?
These focus groups will be held via Zoom on March 9th and 10th, 2022. Participation includes attending one, 60-75 minute focus group to be held at an agreeable time.
If you are interested in participating in these focus groups, please fill out the form by clicking on the button below by Thursday, February 24th at 11:59 p.m., ET.
A diverse group of participants will be selected to ensure representation from a variety of experiences on this topic. Selected participants will receive additional information about next steps. Additionally, participants will receive a $30 gift card after completing the focus group.
If you are unable to make the live focus groups, there will be an offline participation option.
If you have any questions, please contact [email protected].
Rachael Buckingham
Clinical Trial Manager | TDNCC
Seattle Children’s Research Institute