Overview
Rhabdoid tumor is a rare and aggressive type of cancer that most often affects young children, particularly infants and toddlers. The name comes from the word 'rhabdoid,' which describes how the cancer cells look under a microscope — they resemble a type of muscle cell. These tumors can grow in several parts of the body, but they most commonly appear in the kidneys (called malignant rhabdoid tumor of the kidney, or MRTK), the brain and spine (called atypical teratoid/rhabdoid tumor, or AT/RT), and soft tissues throughout the body. When the tumor occurs in multiple locations or is linked to a genetic change, it may be called rhabdoid tumor predisposition syndrome (RTPS). Rhabdoid tumors grow very quickly and can spread to other parts of the body, including the lungs, liver, and brain. Because of this, they are considered one of the most challenging childhood cancers to treat. Symptoms depend on where the tumor is located but often include a lump or swelling, pain, neurological changes, and general signs of illness like fever and weight loss. Treatment typically involves a combination of surgery to remove the tumor, chemotherapy, and sometimes radiation therapy. Newer approaches, including targeted therapies and clinical trials, are being studied. Despite advances in treatment, outcomes remain difficult, especially for very young children. Early diagnosis and care at a specialized cancer center are critical for the best possible outcome.
Also known as:
Key symptoms:
A lump or mass in the abdomen, kidney area, or soft tissueHeadaches or vomiting (if the tumor is in the brain)Seizures or changes in behaviorWeakness or paralysis on one side of the bodyDifficulty walking or loss of balanceBlood in the urine (if the kidney is affected)Unexplained weight lossPersistent feverSwollen belly or abdomenExtreme tiredness or low energyVision or hearing changesIrritability in infantsBulging fontanelle (soft spot) in babies
Clinical phenotype terms (24)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Infantile
Begins in infancy, roughly 1 month to 2 years old
FDA & Trial Timeline
2 eventsSeattle Children's Hospital — PHASE1
National Cancer Institute (NCI) — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Rhabdoid tumor.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersNational Institutes of Health Clinical Center
📍 Bethesda, Maryland
👤 Payal P Khincha, M.D.
👤 Christopher Grunseich, M.D.
Oregon Health and Science University
📍 Portland, Oregon
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 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
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
Travel Grants
No travel grants are currently matched to Rhabdoid tumor.
Community
No community posts yet. Be the first to share your experience with Rhabdoid tumor.
Start the conversation →Latest news about Rhabdoid tumor
Disease timeline:
New trial: Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors
Phase NA trial recruiting.
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 rhabdoid tumor does my child have, and where exactly is it located?,Has genetic testing been done on the tumor and my child's blood, and what did it show?,What treatment plan do you recommend, and what are the goals — cure or disease control?,Are there any clinical trials that my child might be eligible for?,What side effects should we watch for at home, and when should we go to the emergency room?,Should other family members be tested for a genetic mutation?,What support services — such as social work, psychology, or palliative care — are available to our family?
Common questions about Rhabdoid tumor
What is Rhabdoid tumor?
Rhabdoid tumor is a rare and aggressive type of cancer that most often affects young children, particularly infants and toddlers. The name comes from the word 'rhabdoid,' which describes how the cancer cells look under a microscope — they resemble a type of muscle cell. These tumors can grow in several parts of the body, but they most commonly appear in the kidneys (called malignant rhabdoid tumor of the kidney, or MRTK), the brain and spine (called atypical teratoid/rhabdoid tumor, or AT/RT), and soft tissues throughout the body. When the tumor occurs in multiple locations or is linked to a g
At what age does Rhabdoid tumor typically begin?
Typical onset of Rhabdoid tumor is infantile. Age of onset can vary across affected individuals.
Are there clinical trials for Rhabdoid tumor?
Yes — 1 recruiting clinical trial is currently listed for Rhabdoid tumor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Rhabdoid tumor?
24 specialists and care centers treating Rhabdoid tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.