Nasal ganglioglioma

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ORPHA:141115Q30.8
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1Specialists8Treatment centers

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

Nasal ganglioglioma is an extremely rare congenital benign tumor arising within the nasal cavity. It is classified among developmental malformations of the nose and is composed of both neuronal (ganglion cell) and glial cell elements, distinguishing it from simple nasal gliomas which contain only glial tissue. The condition is typically present at birth or identified in early infancy and is thought to result from ectopic central nervous system tissue that becomes sequestered in the nasal region during embryological development. It is classified under congenital malformations of the nose (ICD-10: Q30.8). Clinically, nasal ganglioglioma presents as a mass within the nasal cavity that may cause nasal obstruction, difficulty breathing through the nose, and occasionally feeding difficulties in neonates. The mass is typically firm, non-compressible, and does not transilluminate. Unlike encephaloceles, nasal gangliogliomas generally do not have an intracranial connection, though imaging studies (MRI or CT) are essential to rule out any communication with the central nervous system before intervention. Treatment is primarily surgical excision of the mass. Complete surgical removal is generally curative, and the prognosis is excellent, as these tumors are benign and rarely recur after complete resection. Multidisciplinary evaluation involving otolaryngology, neurosurgery, and radiology is recommended to plan the surgical approach and ensure there is no intracranial extension. Long-term follow-up may be advised to monitor for any recurrence.

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Oct 2024A Study of Lower Radiotherapy Dose to Treat Children With CNS Germinoma

Children's Oncology Group — PHASE2

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Nasal ganglioglioma.

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No actively recruiting trials found for Nasal ganglioglioma at this time.

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

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Specialists

1 foundView all specialists →
MA
Mohamed S Abdelbaki
Mobile, Alabama
Specialist

Rare Disease Specialist

1 Nasal ganglioglioma publication

Treatment Centers

8 centers
⚗️ Trial Site

Children's Hospital Colorado

📍 Aurora, Colorado

👤 Zachary Grinspan, MD

⚗️ Trial Site

Arkansas Children's Hospital

📍 Little Rock, Arkansas

⚗️ Trial Site

Children's Hospital of Orange County

📍 Orange, California

👤 Richard Neibeger, MD

⚗️ Trial Site

Children's National Medical Center

📍 Washington D.C., District of Columbia

👤 Richard Neibeger, MD

⚗️ Trial Site

UCSF Benioff Children's Hospital Oakland

📍 Oakland, California

👤 Neeta Thakur, MD, MPH

⚗️ Trial Site

Connecticut Children's Medical Center

📍 Hartford, Connecticut

⚗️ Trial Site

University of Miami Miller School of Medicine-Sylvester Cancer Center

📍 Miami, Florida

👤 Ann (Annie) W Silk

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

Travel Grants

No travel grants are currently matched to Nasal ganglioglioma.

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Community

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Latest news about Nasal ganglioglioma

Disease timeline:

New trial: A Study of Lower Radiotherapy Dose to Treat Children With CNS Germinoma

Phase PHASE2 trial recruiting. 3-Dimensional Conformal Radiation Therapy

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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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.

Common questions about Nasal ganglioglioma

What is Nasal ganglioglioma?

Nasal ganglioglioma is an extremely rare congenital benign tumor arising within the nasal cavity. It is classified among developmental malformations of the nose and is composed of both neuronal (ganglion cell) and glial cell elements, distinguishing it from simple nasal gliomas which contain only glial tissue. The condition is typically present at birth or identified in early infancy and is thought to result from ectopic central nervous system tissue that becomes sequestered in the nasal region during embryological development. It is classified under congenital malformations of the nose (ICD-1

How is Nasal ganglioglioma inherited?

Nasal ganglioglioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Nasal ganglioglioma typically begin?

Typical onset of Nasal ganglioglioma is neonatal. Age of onset can vary across affected individuals.

Which specialists treat Nasal ganglioglioma?

1 specialists and care centers treating Nasal ganglioglioma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.