Overview
Chordoma is a rare type of bone cancer that grows from leftover cells of the notochord, a structure that helps form the spine in a developing embryo. These cells normally disappear before birth, but in some people, small clusters remain and can eventually turn into a tumor. Chordomas almost always occur along the spine, most commonly at the base of the skull (called the clivus) or at the bottom of the spine (the sacrum or tailbone area). They can also appear in the vertebrae of the neck or back, though this is less common. Chordomas are slow-growing tumors, but they are locally aggressive, meaning they tend to invade nearby bone and soft tissue. They can press on important structures like the brain, spinal cord, or nerves, causing pain, numbness, weakness, or problems with bladder and bowel function depending on their location. Skull base chordomas may cause headaches, double vision, or difficulty swallowing. The main treatment for chordoma is surgery to remove as much of the tumor as possible, often followed by specialized radiation therapy such as proton beam therapy. Because chordomas tend to come back after treatment, long-term follow-up is essential. Chemotherapy has generally not been very effective for chordoma, though targeted therapies are being studied in clinical trials. Despite being slow-growing, chordomas can be difficult to cure completely because of their location near critical structures in the body.
Also known as:
Key symptoms:
Pain at the base of the spine or tailboneHeadachesDouble vision or blurred visionDifficulty swallowingChanges in voice or hoarsenessNumbness or tingling in the arms or legsWeakness in the arms or legsLoss of bladder controlLoss of bowel controlA noticeable lump or mass near the tailboneNeck pain or stiffnessFacial pain or numbnessDifficulty walking or balance problemsLower back pain that does not go away
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsMemorial Sloan Kettering Cancer Center — PHASE1, PHASE2
Sichuan Baili Pharmaceutical Co., Ltd. — PHASE2
Saint John's Cancer Institute — PHASE2
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Centre Antoine Lacassagne — NA
M.D. Anderson Cancer Center — PHASE2
CNAO National Center of Oncological Hadrontherapy
Leiden University Medical Center
Sarcoma Oncology Research Center, LLC — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Chordoma.
14 clinical trialsare 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.
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🔬 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
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🏥 NORDBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
Travel Grants
No travel grants are currently matched to Chordoma.
Community
No community posts yet. Be the first to share your experience with Chordoma.
Start the conversation →Latest news about Chordoma
1 articlesCaregiver 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 is the exact location and size of my chordoma, and has it spread?,Is complete surgical removal possible, and what are the risks of surgery in my case?,Do you recommend proton beam radiation therapy, and where is the nearest center that offers it?,Are there any clinical trials I might be eligible for?,What is the likelihood that my chordoma will come back after treatment?,How will treatment affect my bladder, bowel, and sexual function?,Should my family members be tested for genetic risk factors for chordoma?
Common questions about Chordoma
What is Chordoma?
Chordoma is a rare type of bone cancer that grows from leftover cells of the notochord, a structure that helps form the spine in a developing embryo. These cells normally disappear before birth, but in some people, small clusters remain and can eventually turn into a tumor. Chordomas almost always occur along the spine, most commonly at the base of the skull (called the clivus) or at the bottom of the spine (the sacrum or tailbone area). They can also appear in the vertebrae of the neck or back, though this is less common. Chordomas are slow-growing tumors, but they are locally aggressive, me
How is Chordoma inherited?
Chordoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Chordoma typically begin?
Typical onset of Chordoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Chordoma?
Yes — 14 recruiting clinical trials are currently listed for Chordoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Chordoma?
25 specialists and care centers treating Chordoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.