Overview
Post-transplant lymphoproliferative disease, often called PTLD, is a serious complication that can happen after an organ or stem cell transplant. When someone receives a transplant, they must take medicines called immunosuppressants to stop their body from rejecting the new organ. These medicines weaken the immune system, which can allow certain white blood cells to grow out of control. In most cases, a common virus called Epstein-Barr virus (EBV) — the same virus that causes mono — plays a key role in triggering this abnormal cell growth. PTLD is considered a type of lymphoma, meaning it is a cancer of the lymph system. PTLD can affect many parts of the body, including the lymph nodes, liver, lungs, gut, and even the brain. Symptoms can vary widely depending on where the disease develops. Common signs include swollen lymph nodes, fever, night sweats, unexplained weight loss, and fatigue. Some people develop stomach pain or problems with the transplanted organ itself. Treatment depends on the type and stage of PTLD. The first step is often reducing the immunosuppressant medicines to let the immune system fight back. Other treatments include a targeted antibody therapy called rituximab, chemotherapy, and sometimes radiation. With early detection and treatment, many patients respond well, though outcomes vary. Close monitoring after transplant is essential for catching PTLD early.
Also known as:
Key symptoms:
Swollen lymph nodes in the neck, armpits, or groinPersistent feverDrenching night sweatsUnexplained weight lossExtreme tiredness or fatigueStomach pain or bloatingNausea, vomiting, or diarrheaDifficulty breathing or chest painHeadaches or confusion (if the brain is involved)Signs that the transplanted organ is not working as well as beforeEnlarged tonsils or throat discomfortLoss of appetite
Clinical phenotype terms (16)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsUniversity Hospital, Basel, Switzerland — PHASE1, PHASE2
Northwestern University — PHASE2
Intergroupe Francophone du Myelome — PHASE3
Daihong Liu — PHASE1, PHASE2
Jennifer Amengual — PHASE2
Daihong Liu — PHASE1, PHASE2
Peking University People's Hospital — PHASE2, PHASE3
First Affiliated Hospital of Zhejiang University — PHASE2
Fondazione Italiana Linfomi - ETS
Institute of Hematology & Blood Diseases Hospital, China — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Post-transplant lymphoproliferative disease.
12 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Post-transplant lymphoproliferative disease.
Community
No community posts yet. Be the first to share your experience with Post-transplant lymphoproliferative disease.
Start the conversation →Latest news about Post-transplant lymphoproliferative disease
Disease timeline:
New recruiting trial: Defining ctDNA Metrics in Posttransplant Lymphoproliferative Disorder (PTLD)
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Exploratory Study of EBV-TCR-T Cell Injection for EBV DNAemia After Allogeneic Hematopoietic Stem Cell Transplantation
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Evaluation of the Efficacy of a Treatment by One Single Dose of Rituximab (375mg/m2 ) in the Prevention of the Epstein Barr Virus (EBV) Primary Infection and Post-transplant Lymphoproliferative Disorder in Adult EBV Seronegative Patients Who Received an EBV Seropositive Kidney Allograft
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: A Confirmatory Trial of Adjunctive NAC to Prevent Post Tuberculosis Lung Disease
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Primary Multiple Myeloma Who Achieved MRD Negativity After Induction Therapy, ASCT or Not
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Bridging Allogeneic Hematopoietic Stem Cell Transplantation or Not After CD19 CAR - T (S1904) Cell Therapy for r/r B-cell Acute Lymphoblastic Leukemia
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Testing the Use of Combination Therapy in Adult Patients With Newly Diagnosed Multiple Myeloma, the EQUATE Trial
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: Faecal Microbiota Transplantation After Allogeneic Stem Cell Transplantation
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: A Study to Compare Iberdomide Maintenance Versus Lenalidomide Maintenance Therapy Following Autologous Stem Cell Transplant in Participants With Newly Diagnosed Multiple Myeloma
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
New recruiting trial: CD45RA-depleted CD19-CAR T Cell Consolidation After TCRαβ+/CD19 B Cell-depleted Haploidentical Hematopoietic Cell Transplantation for Relapsed/Refractory CD19+ ALL and Lymphoma
A new clinical trial is recruiting patients for Post-transplant lymphoproliferative disease
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of PTLD do I have, and how does that affect my treatment options?,How will you balance reducing my immunosuppression with protecting my transplanted organ?,Is rituximab the right first treatment for me, and what happens if it does not work?,How often will I need scans and blood tests to monitor my response to treatment?,What are the signs that my PTLD is coming back, and what should I do if I notice them?,Are there clinical trials available for my type of PTLD?,What long-term effects should I expect from treatment, and how will they affect my quality of life?
Common questions about Post-transplant lymphoproliferative disease
What is Post-transplant lymphoproliferative disease?
Post-transplant lymphoproliferative disease, often called PTLD, is a serious complication that can happen after an organ or stem cell transplant. When someone receives a transplant, they must take medicines called immunosuppressants to stop their body from rejecting the new organ. These medicines weaken the immune system, which can allow certain white blood cells to grow out of control. In most cases, a common virus called Epstein-Barr virus (EBV) — the same virus that causes mono — plays a key role in triggering this abnormal cell growth. PTLD is considered a type of lymphoma, meaning it is a
How is Post-transplant lymphoproliferative disease inherited?
Post-transplant lymphoproliferative disease follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Post-transplant lymphoproliferative disease?
Yes — 12 recruiting clinical trials are currently listed for Post-transplant lymphoproliferative disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Post-transplant lymphoproliferative disease?
25 specialists and care centers treating Post-transplant lymphoproliferative disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.