Long-Term Follow-up for Lung Transplant Recipients

This study is observing people who have had lung transplants and previously participated in the Lung Transplant Outcomes Group (LTOG) studies. The main goal is to understand how lung transplant function changes over a long time, up to 25 years, especially looking at Chronic Lung Allograft Dysfunction (CLAD), which is when the transplanted lung doesn't work as well. Researchers will also track your overall health and well-being. This is an observational study, meaning no new treatments are being tested. It aims to gather more information from existing medical records and new assessments from about 4000 participants. The study is currently unclear on its recruitment status.

Study design
This is an observational study following approximately 4000 participants who previously enrolled in LTOG cohort studies. It involves both looking back at past data and collecting new information over time.
What's involved
If you are alive and enroll in the longitudinal part, you would have follow-up data collected every 6 months. This includes reviewing your medical records, performing a Short Physical Performance Battery (SPPB) assessment, providing blood samples, and completing surveys.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed from the date of transplant until the study ends, they withdraw, or are no longer seen at the participating center, for up to 25 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT04787822

Long Term Follow up of the LTOG Cohort

Enrolling by Invitation
Not specifiedAges 13+Observational
University of Pennsylvania
~4,000 participants
Updated 2026-06-03 on ClinicalTrials.gov

At a glance

Recruiting sites
0 of 10 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Chronic Lung Allograft Dysfunction (CLAD) phenotyping
Measured over From date of transplant to the development of CLAD, up to 25 years
+3 more outcomes measured
Lung Transplant Failure and Rejection

NCT04787822

Where you'd take part

This study runs at 10 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Columbia University

    New York, New Yorkno site contact published

  • Duke University

    Durham, North Carolinano site contact published

  • Indiana University

    Indianapolis, Indianano site contact published

  • Johns Hopkins University

    Baltimore, Marylandno site contact published

  • Stanford University

    Stanford, Californiano site contact published

  • University of Alabama Birmingham

    Birmingham, Alabamano site contact published

  • University of California San Francisco

    San Francisco, Californiano site contact published

  • University of Michigan

    Ann Arbor, Michiganno site contact published

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Jason Christie, MD · PRINCIPAL_INVESTIGATOR · University of Pennsylvania
  • Scott Palmer, MD · PRINCIPAL_INVESTIGATOR · Duke University
  • Jonathan Singer, MD · PRINCIPAL_INVESTIGATOR · University of California, San Francisco

This trial hasn't published a contact. View it on ClinicalTrials.gov

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Eligibility criteria

Inclusion

Lung transplant recipients who have previously enrolled in the LTOG cohort studies at one of the participating centers
Lung transplant recipients who have previously enrolled in the LTOG cohort studies at one of the participating centers
Alive

Exclusion

Lung transplant recipient not enrolled in LTOG cohort research studies
Lung transplant recipient not enrolled in the LTOG cohort research studies
Lung transplant recipient not receiving post-transplant follow-up care at a participating LTOG center
  • Chronic Lung Allograft Dysfunction (CLAD) phenotypingFrom date of transplant to the development of CLAD, up to 25 years

    Change in pulmonary function measured by serial pulmonary function tests (PFTs) and data collected at clinical care visits will be used to assess CLAD.

  • Functional status phenotypingFrom date of transplant to until study termination, withdrawal, or no longer being seen for follow-up at the participating center, up to 25 years

    Change in functional status will be measured by the Short Physical Performance Battery (SPPB). The SPPB is a 3-construct measure that includes gait speed, chair stands, and balance. Each construct is scored from 0 - 4 yielding an aggregate score ranging from 0 - 12. Lower SPPB scores reflect increased frailty.

  • Well being phenotyping-LT-VLAFrom date of transplant to until study termination, withdrawal, or no longer being seen for follow-up at the participating center, up to 25 years

    Change in well being will be measured by patient reported outcomes including the LT-VLA scale. The LT-VLA scale presents a list of activities and asks respondents to rate their difficulty in performing each one on a 4-point scale. A higher score on the LT-VLA indicates more disability.

  • Well being phenotyping-LT-QOLFrom date of transplant to until study termination, withdrawal, or no longer being seen for follow-up at the participating center, up to 25 years

    Change in well being will be measured by patient reported outcomes including the Lung Transplant Quality of Life (LT-QOL) survey. The Lung Transplant Quality of Life (LT-QOL) survey will be used to measure disease specific QOL. The LT-QOL utilizes 5 point scales for all items. The general quality of life scale is scored so that higher scores indicate better QOL.