Overview
Embryonal carcinoma of the central nervous system (CNS) is a very rare and aggressive type of brain tumor. It belongs to a group of tumors called germ cell tumors, which are thought to arise from primitive cells that normally develop into reproductive cells. When these cells end up in the brain or spinal cord and begin to grow abnormally, they can form an embryonal carcinoma. This tumor is sometimes referred to as a CNS embryonal carcinoma or intracranial embryonal carcinoma. This tumor most often develops in the brain, particularly in areas like the pineal gland or the ventricles (fluid-filled spaces in the brain). Because it grows in the brain, it can press on surrounding tissue and disrupt normal brain function. Common symptoms include headaches, nausea, vomiting, vision problems, and changes in behavior or thinking. Some people experience problems with balance or coordination. Treatment usually involves a combination of surgery to remove as much of the tumor as possible, followed by radiation therapy and chemotherapy. Because this is such a rare tumor, treatment is often guided by protocols used for similar germ cell tumors. The outlook depends on how much of the tumor can be removed and how well it responds to treatment. Early diagnosis and treatment at a specialized cancer center give the best chance of a good outcome.
Also known as:
Key symptoms:
Persistent or worsening headachesNausea and vomiting, especially in the morningBlurred or double visionProblems with balance and coordinationDifficulty walkingChanges in behavior or personalityMemory problems or confusionSeizuresExtreme tiredness or fatigueIncreased head size in very young childrenHormonal changes such as early puberty or diabetes insipidus (excessive thirst and urination)
Sporadic
Usually appears on its own, not inherited from a parent
Childhood
Begins in childhood, roughly ages 1 to 12
FDA & Trial Timeline
2 eventsTango Therapeutics, Inc. — PHASE1, PHASE2
Mayo Clinic — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Embryonal carcinoma of the central nervous system.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Embryonal carcinoma of the central nervous system.
Community
No community posts yet. Be the first to share your experience with Embryonal carcinoma of the central nervous system.
Start the conversation →Latest news about Embryonal carcinoma of the central nervous system
Disease timeline:
New recruiting trial: Breathing Practice for Brain and Mental Health in Cancer and Neurodegenerative Diseases
A new clinical trial is recruiting patients for Embryonal carcinoma of the central nervous system
New recruiting trial: Safety and Tolerability of TNG456 Alone and in Combination With Abemaciclib in Patients With Solid Tumors With MTAP Loss
A new clinical trial is recruiting patients for Embryonal carcinoma of the central nervous system
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 stage is the tumor and has it spread to other parts of the brain or spine?,What treatment plan do you recommend and what are the goals — cure or control?,What are the short-term and long-term side effects of the proposed treatment, especially for brain development?,Are there any clinical trials available that might be appropriate for this diagnosis?,How will we monitor whether the treatment is working, and how often will scans be done?,What support services are available, such as neuropsychology, rehabilitation, or social work?,What signs should prompt us to seek emergency care between appointments?
Common questions about Embryonal carcinoma of the central nervous system
What is Embryonal carcinoma of the central nervous system?
Embryonal carcinoma of the central nervous system (CNS) is a very rare and aggressive type of brain tumor. It belongs to a group of tumors called germ cell tumors, which are thought to arise from primitive cells that normally develop into reproductive cells. When these cells end up in the brain or spinal cord and begin to grow abnormally, they can form an embryonal carcinoma. This tumor is sometimes referred to as a CNS embryonal carcinoma or intracranial embryonal carcinoma. This tumor most often develops in the brain, particularly in areas like the pineal gland or the ventricles (fluid-fill
How is Embryonal carcinoma of the central nervous system inherited?
Embryonal carcinoma of the central nervous system follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Embryonal carcinoma of the central nervous system typically begin?
Typical onset of Embryonal carcinoma of the central nervous system is childhood. Age of onset can vary across affected individuals.
Are there clinical trials for Embryonal carcinoma of the central nervous system?
Yes — 1 recruiting clinical trial is currently listed for Embryonal carcinoma of the central nervous system on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Embryonal carcinoma of the central nervous system?
16 specialists and care centers treating Embryonal carcinoma of the central nervous system are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.