CF Foundation Launches Lung Transplant Biorepository and Patient Registry

The Cystic Fibrosis Lung Transplant Consortium Biorepository and Patient Registry, in collaboration with Cleveland Clinic, will provide critical clinical data and samples to support future research investigating complications of lung transplant.

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Today, the Cystic Fibrosis Foundation announced the launch of a first-of-its-kind Cystic Fibrosis Lung Transplant Consortium (CFLTC) Biorepository and Registry. The CFLTC Biorepository and Patient Registry, in collaboration with Cleveland Clinic, will support research to improve understanding of the factors that affect lung transplant outcomes.

A particular focus of the registry will be the factors that contribute to chronic lung allograft dysfunction (CLAD), one of the most common post-transplant complications and a leading cause of death post-transplant. 

“The biorepository and registry for lung transplant recipients represents an exciting leap forward in our ability to understand and use research to help improve lung transplant outcomes. Our goal is ultimately to prevent complications for all people with cystic fibrosis who have undergone lung transplantation,” said Albert Faro, MD, vice president of clinical affairs at the Cystic Fibrosis Foundation. “Ensuring that people with CF who undergo transplant have the best possible outcomes remains a top priority for the Foundation.”

About the Cystic Fibrosis Lung Transplant Consortium Biorepository and Registry

The CFLTC Biorepository and Registry act like a library -- the Registry stores clinical data related to transplant care and the Biorepository stores biological samples, including blood and bronchoalveolar lavage fluid. Researchers can access these samples and data to support research into CLAD to help improve short- and long-term transplant outcomes. Having a central and standardized approach will enable researchers to ask more precise questions and come to stronger conclusions.

In 2020, the Foundation awarded funding to Cleveland Clinic to establish the CFLTC Biorepository Coordinating Center, which manages the logistics of sample collection and storage and provides study oversight and support. The Cystic Fibrosis Lung Transplant Consortium -- a group of 15 lung transplant centers in the U.S. and Canada -- contribute expertise, biospecimens, and clinical data to the CFLTC Biorepository and Registry.

The CFLTC Biorepository samples collected and stored at the Cleveland Clinic Coordinating Center will be linked to clinical data kept in the CFLTC Patient Registry -- which is managed by the CF Foundation and works similarly to the Foundation's established Patient Registry.

Eligible, consenting participants will be able to contribute specimens as part of their regular transplant care appointments. Having more samples and data enable better research. To maximize the number of samples and data available for research, individuals who receive a double-lung transplant will be able to participate, regardless of whether or not they have CF. University of Washington Medical Center is the first consortium site to enroll a patient.

Individuals who have already received a lung transplant and are interested in learning more about the CFLTC Biorepository and Registry and how to participate are encouraged to contact lungtransplant@cff.org.

About the Lung Transplant Initiative

As part of the CF Foundation's commitment to helping people with CF wherever they are on their journey, the Foundation established the Lung Transplant Initiative in 2016 with the goal of maximizing the opportunity for transplant as a life-sustaining therapy and extending post-transplant survival. Since the initiative began, the Foundation has helped facilitate the creation of new clinical care guidelines, extended a key lung transplant study, worked to improve organ allocation for people with CF, developed a clinical database focused on advanced lung disease and lung transplant, awarded research grants, and now has funded the new CFLTC Biorepository and Registry.

Historically, approximately 200 people with CF receive a double-lung transplant per year. Lung transplantation remains a vital treatment option for individuals with CF who have advanced lung disease. There are approximately 1,500 people with CF who have had a lung transplant in the United States. While median survival gained from kidney, heart, and liver transplants are well beyond 10 years, median survival of lung transplant recipients with CF remains at 9.9 years for people in the U.S. transplanted between 1992 and 2017. Post-transplant outcomes vary widely among people with cystic fibrosis, and the factors that drive these outcomes are not well understood. The Foundation's Lung Transplant Initiative aims to increase our understanding of these factors and drive therapeutic development to improve outcomes.

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Our Research Approach | Patient Registry | Research
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