Expertise and Research Interests
Survivors of hematopoietic cell transplantation (HCT) have more late effects, worse quality of life, and more medical complications compared to people who do not undergo HCT. In people who receive stem cells from another person, unique immune mediated disorders such as chronic graft-versus-host disease (GVHD) take a particularly high toll. Chronic GVHD resembles known autoimmune syndromes and solid organ allograft rejection, but the underlying biology is poorly characterized. Dr. Lee’s research program is devoted to understanding late effects and chronic GVHD, and developing better approaches for the prevention, diagnosis and treatment of these transplant-related problems. Almost all of our studies include collection of biological samples for analysis by our laboratory colleagues as well as collection and analysis of quality-of-life and symptom information from study participants.
In addition to her research projects, Dr. Lee is also the Research Director of the Long-Term-Follow-Up Program (LTFU) at Fred Hutch. This program follows more than 7,000 HCT survivors.
Overview of Chronic GVHD
Clinical context
Chronic graft-versus-host disease (GVHD) is a multisystem autoimmune-like disorder occurring after allogeneic hematopoietic cell transplantation (HCT). It results in inflammation, scarring, and organ dysfunction. Chronic GVHD is the most common long-term complication of HCT, associated with an increased risk of infection (the major cause of death from chronic GVHD), potentially seriously impaired organ function, and poor quality of life. Chronic GVHD affects 10% to 30% of patients who receive stem cells from another person.
Clinical manifestations
Chronic GVHD typically involves one or more organs including skin, mouth, liver, eyes, intestinal tract, vagina, esophagus, joints, and lungs. Sometimes topical treatment is enough. For other people, treatment involves taking immunosuppressive medications, often for several years. As a result, all patients with chronic GVHD are considered immune compromised. Any infection should be aggressively treated.
Patients may experience red rash, itching, mouth sores and sensitivity, dry eyes and diarrhea. Liver test results may be high, although most people do not have any symptoms from this. More fibrotic and chronic manifestations can occur such as scarring and lichen-planus skin changes, fasciitis, Sjögren’s syndrome, joint contractures, esophageal strictures, and bronchiolitis obliterans. Rarely, chronic GVHD can affect the kidneys, muscles, hematopoietic system, nerves and brain.
Chronic GVHD and its therapy, specifically the prolonged exposure to immunosuppressive medications and steroids, cause significant impairment of quality of life in transplant survivors who have this complication. Quality of life and symptom surveys are often used to measure a patient’s experience of the disease.
Resources
- National Bone Marrow Transplant Link: Chronic GVHD
- Blood & Marrow Transplant Information Network: Chronic GVHD
- National Marrow Donor Program: Graft versus Host Disease
2020 NIH Consensus Development Project on Criteria for Clinical Trials in Chronic GVHD
2025 NIH Consensus Development Project on Criteria for Clinical Trials in Chronic GVHD Update
NIH Chronic Graft-Versus-Host Disease Consensus Conference 2025 Update.
Lee SJ, Williams KM, Sarantopoulos S, Kitko CL, Cutler C, Pidala J, Hill GR, DeFilipp Z, Greinix HT, Wolff D, Paczesny S, Cuvelier GDE, Schultz KR, Pavletic SZ.Transplant Cell Ther. 2025 Sep;31(9):678.e1-678.e16. doi: 10.1016/j.jtct.2025.05.016. Epub 2025 May 21.PMID: 40409691
Chronic Graft-vs-Host Disease (GVHD) Consortium
The Chronic GVHD Consortium was established to conduct investigations of GVHD that occur after allogeneic stem cell transplantation. Dr. Lee is the Principal Investigator for the consortium and holds various sub-contracts with participating sites and companies in order to conduct clinical research. Along with implementing studies, the Consortium was also created to provide an ongoing resource for collaboration with other investigators around the world. Below is a list of participating consortium sites as well as links to consortium research resources.
Participating Core Sites
- City of Hope, Duarte, CA
- Cleveland Clinic, Cleveland, OH
- Dana-Farber Cancer Institute, Boston, MA
- Fred Hutchinson Cancer Center, Seattle, WA
- H. Lee Moffitt Cancer Center, Tampa, FL
- MD Anderson Cancer Center, Houston, TX
- Memorial Sloan Kettering Cancer Center, New York, NY
- NIH/National Cancer Institute, Bethesda, MD
- Ohio State University, Columbus, OH
Closed Sites
- Duke University, Durham, NC
- Mayo Clinic, Scottsdale, AZ
- Medical College of Wisconsin, Milwaukee, WI
- Nebraska Medical Center, Omaha, NE
- Roswell Park Cancer Institute, Buffalo, NY
- Stanford University, Stanford, CA
- University of Florida, Gainesville, FL
- University of Minnesota, Minneapolis, MN
- University of North Carolina, Chapel Hill, NC
- University of Utah, Salt Lake City, UT
- University of Pittsburgh, Pittsburgh, PA
- Vanderbilt University, Nashville, TN
- Washington University, St. Louis, MO
- Weill Cornell Medical College, New York, NY
- Vancouver General Hospital, Vancouver, BC, Canada
Research Resources
- Lee Symptom Scale Package and SAS code (.sas file) for calculating scores. For academic or commercial interest in using any of the Lee Symptom Scales, please reach out to our Business Development and Strategy Office, bds@fredhutch.org, for the appropriate license agreement.
- Chronic GVHD Consortium Sample Repositories
- U54 coded CRFs
- 2192 Coded CRFs
- 2710 Coded CRFs