Lung Transplant Biorepository, Registry Targets Patient Outcomes
The Cystic Fibrosis Foundation (CFF) and the Cleveland Clinic are launching the Cystic Fibrosis Lung Transplant Consortium (CFLTC) Biorepository and Registry, aimed at supporting research into understanding the factors that influence lung transplant outcomes.
“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,” Albert Faro, MD, vice president of clinical affairs at the CFF, said in a press release.
“Our goal is ultimately to prevent complications for all people with cystic fibrosis who have undergone lung transplantation,” he added. “Ensuring that people with CF who undergo transplant have the best possible outcomes remains a top priority for the Foundation.”
The biorepository functions like a library, storing transplant-related clinical data and biological samples, such as blood and bronchoalveolar lavage fluid, in a central, standardized format, which researchers will be able to access.
The information contained in the Biorepository and Registry may enable researchers to investigate more precise questions regarding lung transplants and to reach stronger conclusions.
In particular, the registry will focus on the factors contributing to chronic lung allograft dysfunction (CLAD), a set of complications arising predominantly when the body rejects a transplant. CLAD is one of the most common post-transplant complications and a leading cause of mortality in these cases.
The Cleveland Clinic Coordinating Center will store tissue samples, which will be linked to clinical data maintained at the CFLTC Patient Registry. This CFF-managed registry is similar to the Foundation’s established Patient Registry, which the organization uses to create guidelines for patient care and to assist healthcare practitioners working with CF patients.
The CFF also has applied the data contained in this registry toward identifying factors that can better predict an individual’s risk of dying while awaiting transplant.
Participation in the Biorepository and Registry is voluntary and those eligible may contribute samples during their regular transplant care visits.
To maximize the amount of information available, recipients of double lung transplants can contribute even if they haven’t been diagnosed with CF. More samples and data available contribute to overall better research, the Foundation said.
Individuals who already have received a transplant also may contribute. Those wishing to learn more are encouraged to contact [email protected].
The University of Washington Medical Center is the first CFLTC site to enroll a participant.
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