OBSOLETE: Low-grade ependymoma

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ORPHA:251633
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Overview

Low-grade ependymoma is a type of brain or spinal cord tumor that grows from cells called ependymal cells. These cells normally line the fluid-filled spaces inside the brain (called ventricles) and the central canal of the spinal cord. The term 'low-grade' means the tumor grows slowly and the cells look relatively normal under a microscope. It is worth noting that this specific Orphanet classification is now considered obsolete, as modern tumor classification systems (including the 2021 WHO Classification of Central Nervous System Tumors) have reorganized ependymomas into more specific subtypes based on their location and molecular features. Symptoms depend on where the tumor is located. Brain tumors can cause headaches, nausea, vomiting, and problems with balance or coordination. Spinal cord tumors may cause back pain, weakness in the arms or legs, or numbness. In children, tumors near the fluid drainage system of the brain can cause a dangerous buildup of fluid called hydrocephalus. Treatment usually involves surgery to remove as much of the tumor as safely possible, sometimes followed by radiation therapy. Because these tumors grow slowly, many patients can live for many years after diagnosis. However, they can come back, so long-term monitoring with regular MRI scans is very important. Research into targeted therapies based on tumor genetics is ongoing and offers hope for better treatments in the future.

Key symptoms:

Persistent or worsening headachesNausea and vomiting, especially in the morningProblems with balance or walkingBack or neck painWeakness or numbness in the arms or legsBladder or bowel control problems (with spinal tumors)Vision changes or double visionFatigue and low energySeizuresEnlarged head in young children (due to fluid buildup)Difficulty concentrating or memory problems

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Low-grade ependymoma.

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No actively recruiting trials found for OBSOLETE: Low-grade ependymoma at this time.

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Search ClinicalTrials.gov ↗Join the OBSOLETE: Low-grade ependymoma community →

No specialists are currently listed for OBSOLETE: Low-grade ependymoma.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to OBSOLETE: Low-grade ependymoma.

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Community

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Latest news about OBSOLETE: Low-grade ependymoma

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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.Was my tumor completely removed, and what does that mean for my risk of it coming back?,Should my tumor tissue be tested for molecular markers, and how will those results change my treatment plan?,Do I need radiation therapy, and what are the short- and long-term side effects?,How often will I need MRI scans, and for how long?,Are there any clinical trials I should consider for my specific tumor type?,What rehabilitation services do you recommend to help with any physical or cognitive effects?,Should other members of my family be evaluated or tested for any related conditions?

Common questions about OBSOLETE: Low-grade ependymoma

What is OBSOLETE: Low-grade ependymoma?

Low-grade ependymoma is a type of brain or spinal cord tumor that grows from cells called ependymal cells. These cells normally line the fluid-filled spaces inside the brain (called ventricles) and the central canal of the spinal cord. The term 'low-grade' means the tumor grows slowly and the cells look relatively normal under a microscope. It is worth noting that this specific Orphanet classification is now considered obsolete, as modern tumor classification systems (including the 2021 WHO Classification of Central Nervous System Tumors) have reorganized ependymomas into more specific subtype

How is OBSOLETE: Low-grade ependymoma inherited?

OBSOLETE: Low-grade ependymoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.