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Comment on CFF Transplant Guidelines

Lung transplantation has become a viable option for extending the quality of life for individuals living with cystic fibrosis. The Cystic Fibrosis Foundation has drafted guidelines for the referral of patients for transplant consultation and is seeking comment before finalizing the guidelines. Here is the announcement from Community Voice:

The CF Foundation is requesting feedback on the draft of the Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines.

The CF Lung Transplant Referral Guidelines Committee, which comprises of health care providers, transplant health care providers, and an adult with CF researched and developed the consensus recommendation statements presented in the attached draft.  They also worked closely with a group of Community Voice members to gather additional feedback and to hear from a variety of experiences with the transplant journey.

It is our hope that you will add your feedback to ensure that our recommendations are actionable and helpful for lung transplant referrals for individuals with cystic fibrosis.

The draft guidelines can be found here: Public_Comment_Draft_Lung_Transplant_Referral_guidelines-1

To provide feedback on the draft guidelines, please complete the following survey. The deadline for comments is Wednesday, October 10th, 2018, 5:00 PM, Eastern.

Here is an overview of what you will find in the attached document:

Page 2: Title and authors, Introduction, Methods for developing guidelines, Focus Groups

Page 3: Recommendations and supporting evidence

Page 4: Figure 1- Lung function thresholds for communication about lung transplantation and timing of lung transplant referral

Page 13: Table 1- Summary of Recommendations

Page 16: Table 2- Focus group-derived themes and considerations for communication with individuals with cystic fibrosis

Page 18: Table 3- Clinical and educational milestones for lung transplant referral

Page 23: References

Terms that may be useful:

LTx: Lung Transplant

ALD: Advanced Lung Disease

We value your input. 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 do not hesitate to reach out to Sarah Hempstead ( or

Please take the time review and comment on the draft guidelines by Wednesday October 10th.

Read the draft guidelines here: Public_Comment_Draft_Lung_Transplant_Referral_guidelines-1

Take the survey here:

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