Cystic Fibrosis Lung Transplant Consortium

The Cystic Fibrosis Lung Transplant Consortium is made up of 15 lung transplant centers in the U.S. and Canada with the goal of improving care and conducting research in cystic fibrosis lung transplantation.

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In this article

Summary

All 15 centers focus on improving the transplant journey for people with CF, including transplant referrals and post-transplant care management.
The consortium helps support the Lung Transplant Biorepository and Patient Registry, which gathers critical, clinical data and lung tissue samples to inform future research on lung transplant complications.

Background

The Cystic Fibrosis Foundation’s commitment to leaving no one in the cystic fibrosis community behind is the driving force for the Cystic Fibrosis Lung Transplant Consortium, which started in 2016. In the era of modulator therapies such as Trikafta^®, some people with CF may still develop advanced lung disease (ALD). For this reason, we are more committed than ever to advance research and care for those with ALD who have undergone or need to undergo a lung transplant.

Goals

The primary goals of the consortium are to:

Improve lung transplant outcomes through quality improvement, guidelines development, and research focused primarily on chronic lung allograft dysfunction (CLAD). CLAD is a post-transplant complication related to chronic organ rejection, a primary obstacle to successful and lasting lung transplants.
Promote interaction between CF and lung transplant physicians to enhance the care of people with CF who have advanced lung disease.
Provide a forum for exchanging ideas and best practices about the science and art of lung transplantation.
Establish and maintain a database of CF lung transplant recipients and support the collection of lung tissue samples for research.

Consortium Sites

The 15 consortium sites are:

The Cleveland Clinic
Columbia University
Duke University
Johns Hopkins University
Loyola University
University of Minnesota
University of Pennsylvania
University of Pittsburgh
University of Toronto
University of Washington in Seattle
Washington University in St. Louis
University of California, Los Angeles
University of California, San Francisco
Massachusetts General
Stanford University

Research

The Cystic Fibrosis Lung Transplant Consortium Biorepository and Registry stores lung tissue samples and clinical data related to transplant care. Tissue samples and data from post-transplant clinic visits are collected as part of a study. Soon, researchers will be able to access these samples and data, as well as others to support research into CLAD. In the future, this data will be linked to other research databases such as the CF Foundation’s Patient Registry. This will allow clinicians and researchers to understand the long-term outcomes of people with CF who have undergone a lung transplant.

The Airway Brush in CLAD (ABC) study is another study that utilizes the Biorepository and Registry infrastructure. ABC, which began enrollment in early 2024, examines whether certain cells in the lung can be used to identify the beginning stages of CLAD and help determine important targets for early intervention.

Clinical

Many of the clinicians involved in the consortium have participated in the development of care guidelines and resources for people with CF who have undergone a lung transplant. Guidelines highlight best clinical practices based on research and clinical outcomes and are used to provide the best clinical care possible to people with CF. Individuals with CF make up a small portion of the total population of lung transplant recipients in the U.S. but providing quality individualized care for specific CF needs is vital. These guidelines help support clinicians so that people with CF and their families can be informed advocates of their own care.

These guidelines and resources include:

Clinical care consensus statements for the care of CF lung transplant recipients to standardize post-transplant care
A position paper that outlines two models of post-lung transplant care for optimal CF care after transplant.
A post-transplant care checklist that outlines the elements of high-quality care for the CF lung transplant recipient. The checklist was based on the two models of care described in the position paper. Clinicians can use the checklist to guide and track post-lung transplant care. This tool can also benefit lung-transplant recipients and their families by increasing their awareness of long-term post-transplant needs.

All consortium sites have been involved in quality improvement efforts between transplant centers and CF care centers. These efforts optimize care of individuals with CF before and after transplant, including transplant referrals, the transplant process, and care after transplant.

Community Involvement

We are honored to have four community members who have undergone one or more lung transplants on the consortium steering committee. These individuals help guide the consortium’s work by sharing their experiences, providing context to the research and clinical work discussed. Community members are encouraged to share their concerns, along with concerns they are hearing from the community that the consortium may not be addressing. The CF lung transplant community and individuals with advanced CF lung disease are at the heart of the consortium’s work.

The consortium engages the CF community at virtual Foundation events like ResearchCon and BreatheCon. At these events, consortium members answer questions from the community and share information that people with CF can use to advocate for themselves in their care before and after transplant.

We are fortunate to have the following community members as the current representatives:

	April Biggs Adult With CF April (she/her) is a Southern queer, multiply disabled dance artist, access artistry consultant, and writer who works on the stolen lands of the Kiikaapoi peoples (Milwaukee). She teaches dance extensively throughout the U.S., most recently at the University of Wisconsin-Milwaukee, the University at Buffalo (SUNY), and the Ohio State University.
	Samantha Rick Adult With CF Originally from Wisconsin, Samantha has been living in California since 2003. She works as a case manager for the Alternative Sentencing Program under the Plumas County District Attorney’s Office, aiding adults in the criminal justice system. Samantha underwent a second double-lung transplant in 2016, after developing CLAD and chronic rejection with her first one. She spends her free time rock climbing, mountain biking, traveling, and volunteering with her local CF chapter and other local nonprofits.
	Ian Tisdale Adult With CF Ian Tisdale was diagnosed with CF when he was 3 months old and since then has been treated by the medical team at Johns Hopkins. In 2017, Ian received a double-lung transplant and has never felt better. He enjoys running several times per week and lives with his wonderful wife and amazing 7-year-old son in northern Virginia.
	Fanny Vlahos Adult With CF Fanny received a double-lung transplant in 2012. She has been involved with the CF Foundation for many years both at the national and state levels. Fanny earned Volunteer of the Year in 2019 and has accumulated several other awards and commendations for her dedication and focus on patient advocacy. She lives in the Chicago area with her husband, their teenage son, and their rescue pit bull.

We want to hear directly from the community. If you have any questions or comments, please email lungtransplant@cff.org.

Annual Report

To learn more about the work of the Advanced Lung Disease and Lung Transplant Program at the CF Foundation, please see the most recent version of the program’s annual report in English and Spanish: