Tumor of meninges

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ORPHA:252025
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29Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Tumor of meninges (Orphanet code 252025) is a broad category of neoplasms that arise from the meningeal coverings of the brain and spinal cord. The meninges consist of three layers — the dura mater, arachnoid mater, and pia mater — and tumors originating from these structures encompass a heterogeneous group of neoplasms, the most common of which are meningiomas. However, this category also includes rarer tumors such as hemangiopericytomas (now classified as solitary fibrous tumors), melanocytic tumors of the meninges, and mesenchymal non-meningothelial tumors. These tumors primarily affect the central nervous system and can cause symptoms through compression of adjacent brain or spinal cord tissue. Clinical features vary depending on tumor location, size, and growth rate. Common symptoms include headaches, seizures, focal neurological deficits (such as weakness, sensory changes, or visual disturbances), cognitive changes, and signs of increased intracranial pressure. Spinal meningeal tumors may present with back pain, radiculopathy, or myelopathy. Most meningeal tumors occur sporadically, though some are associated with genetic predisposition syndromes such as neurofibromatosis type 2 (NF2), which involves mutations in the NF2 gene on chromosome 22q12. Treatment depends on the specific tumor type, grade, and location. Surgical resection is the primary treatment for most meningeal tumors, and complete removal can be curative for benign lesions. Radiation therapy, including stereotactic radiosurgery, is used for tumors that are not amenable to complete surgical resection or for higher-grade lesions. Chemotherapy has a limited role but may be considered for aggressive or recurrent tumors. Prognosis varies widely, from excellent for completely resected benign meningiomas to poor for high-grade malignant meningeal tumors. Regular follow-up imaging is recommended due to the risk of recurrence.

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jul 2026Optimizing Contrast Dose and Scanning Parameters for Detection of Leptomeningeal Disease

M.D. Anderson Cancer Center — NA

TrialNOT YET RECRUITING
Mar 2026Allogeneic, Antigen-Presenting, GM-CSF-secreting, SV-BR-1-GM Whole Cell-Therapeutic Vaccine and Immunotherapy: A Phase I Pilot Safety and Feasibility Study for Solid Tumor Patients With CNS Metastases

Medical College of Wisconsin — PHASE1

TrialNOT YET RECRUITING
Jan 2026Zorifertinib With Osimertinib for NSCLC With Meningeal Progression

Alpha Biopharma (Jiangsu) Co., Ltd. — PHASE1

TrialNOT YET RECRUITING
Jan 2026Pulsatile High-dose Furmonertinib in EGFR-mutant NSCLC With Leptomeningeal Metastasis

Guangzhou University of Traditional Chinese Medicine — NA

TrialNOT YET RECRUITING
Dec 2025CSF and Blood Plasma Liquid Biopsy in Patients With Metastatic Solid Tumours and CNS Metastases or no CNS Metastases

Sunnybrook Health Sciences Centre — NA

TrialRECRUITING
Sep 2025A Two-cohort Study of SHR-A1811 in the Treatment of HER2-positive Breast Cancer With Brain Metastases

Peking University Cancer Hospital & Institute — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jul 2025Multiple Dose Intraventricular Administration of Rhenium-186 NanoLiposome for Leptomeningeal Metastases

Plus Therapeutics — PHASE1

TrialRECRUITING
Jul 2025AI-Based Ultrasound Prediction Model for Intracranial Pressure and Prognosis in Lung Cancer Patients With Leptomeningeal Metastasis: A Dual-Center Study

The Affiliated Nanjing Drum Tower Hospital of Nanjing University Medical School

TrialNOT YET RECRUITING
Jun 2025Evaluate the Safety, Tolerability, Biodistribution Characteristics and Preliminary Efficacy of BioTTT001

Henan Cancer Hospital — PHASE1, PHASE2

TrialRECRUITING
May 2025Study of Craniospinal Irradiation With Linac Based Volumetric Modulated Arc Therapy (VMAT) for Patients With Leptomeningeal Metastasis

NYU Langone Health — NA

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Tumor of meninges.

View clinical trials →

No actively recruiting trials found for Tumor of meninges at this time.

New trials open frequently. Follow this disease to get notified.

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Specialists

Showing 25 of 29View all specialists →
SM
Steve Braunstein, MD
SAN FRANCISCO, CA
Specialist
PI on 1 active trial
NP
Nancy Oberheim Bush, MD, PhD
SANTA MONICA, CA
Specialist
PI on 1 active trial
MD
Matthias Guckenberger, Dr.
Specialist
PI on 1 active trial
PM
Prashant Chittiboina, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 7 active trials
NM
Nader Sanai, MD
PHOENIX, AZ
Specialist
PI on 8 active trials
HM
Helen A Shih, MD
Specialist
PI on 2 active trials
TX
Tao Xie
Specialist
PI on 3 active trials33 Tumor of meninges publications
JM
Jana Portnow, MD
DUARTE, CA
Specialist
PI on 3 active trials
DM
David Rizzieri, MD
CHARLOTTE, NC
Specialist
PI on 7 active trials
RP
Robert M Prins
Specialist
PI on 1 active trial1 Tumor of meninges publication
EM
Edward Pan, M.D.
ORLANDO, FL
Specialist
PI on 2 active trials
PM
Patrick Y. Wen, MD
BOSTON, MA
Specialist
PI on 6 active trials
BB
Behnam Badie
ARCADIA, CA
Specialist
PI on 2 active trials1 Tumor of meninges publication
LM
Lauren Abrey, MD
NEW YORK, NY
Specialist
PI on 1 active trial1 Tumor of meninges publication
JP
James L. Rubenstein, MD, PhD
Specialist
PI on 2 active trials
AO
Antonio Omuro
STANFORD, CA
Specialist
PI on 1 active trial
MV
Michael A Vogelbaum
TAMPA, FL
Specialist
PI on 1 active trial1 Tumor of meninges publication
CM
C. Leland Rogers, MD
SWAMPSCOTT, MA
Specialist
PI on 1 active trial
JP
Jonathan Yang, MD, PhD
Specialist
PI on 1 active trial
ZM
Zhenyu Pan, PhD, MD
Specialist
PI on 1 active trial
MM
Maya Gutierrez, MD
CHICAGO, IL
Specialist
PI on 1 active trial
BM
Barbara J O'Brien, MD
Specialist
PI on 1 active trial

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 Tumor of meninges.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Tumor of meninges

Disease timeline:

New recruiting trial: Efficacy and Safety of Intraventricule Pemetrexed Disodium Administered Via Ommaya Reservoir

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Tumor Treating Fields for the Treatment of Leptomeningeal Metastases of the Spine in Patients With Breast or Lung Cancer

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Hippocampal Avoidance in Craniospinal Irradiation for the Treatment of Leptomeningeal Metastases From Breast Cancer or Non-small Cell Lung Cancer

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Trastuzumab Deruxtecan (T-DXd) for People With Brain Cancer

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: CSF and Blood Plasma Liquid Biopsy in Patients With Metastatic Solid Tumours and CNS Metastases or no CNS Metastases

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Testing Proton Craniospinal Radiation Therapy Versus the Usual Radiation Therapy for Leptomeningeal Metastasis, RADIATE-LM Trial

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Double-Dose Third-Generation EGFR-TKI Plus Bevacizumab and Intrathecal Chemotherapy for Refractory Leptomeningeal Metastatic NSCLC: A Phase II Study

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Intra-pemetrexed Plus Third-generation Small Molecule TKI Drugs (e.g. 'Osimertinib') Versus Third-generation Small Molecule TKI Drugs Alone for Leptomeningeal Metastasis From Epidermal Growth Factor Receptor Mutation-Positive Non-Small-cell Lung Cancer

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Firmonertinib Combined With Intrathecal Injection for the Treatment of EGFR Mutant NSCLC With Leptomeningeal Metastases

A new clinical trial is recruiting patients for Tumor of meninges

New recruiting trial: Capecitabine, Tucatinib, and Intrathecal Trastuzumab for Breast Cancer Patients With Leptomeningeal Disease

A new clinical trial is recruiting patients for Tumor of meninges

Caregiver Resources

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Tumor of meninges

What is Tumor of meninges?

Tumor of meninges (Orphanet code 252025) is a broad category of neoplasms that arise from the meningeal coverings of the brain and spinal cord. The meninges consist of three layers — the dura mater, arachnoid mater, and pia mater — and tumors originating from these structures encompass a heterogeneous group of neoplasms, the most common of which are meningiomas. However, this category also includes rarer tumors such as hemangiopericytomas (now classified as solitary fibrous tumors), melanocytic tumors of the meninges, and mesenchymal non-meningothelial tumors. These tumors primarily affect the

At what age does Tumor of meninges typically begin?

Typical onset of Tumor of meninges is adult. Age of onset can vary across affected individuals.

Which specialists treat Tumor of meninges?

25 specialists and care centers treating Tumor of meninges are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.