Meningocele

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ORPHA:93968
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2Specialists8Treatment centers

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

Meningocele is a type of neural tube defect (NTD) in which the meninges (the protective membranes surrounding the brain and spinal cord) protrude through a defect in the vertebral column or skull, forming a sac filled with cerebrospinal fluid. Unlike myelomeningocele, the spinal cord and nerve roots are not contained within the herniated sac, which generally results in a milder clinical presentation. Meningocele can occur along any part of the spine but is most commonly found in the lumbosacral region. It may also occur in the cranial region (cranial meningocele). The condition is typically detected at birth as a visible cystic mass covered by skin or a thin membrane. Clinical features vary depending on the location and size of the defect. Many patients with spinal meningocele have relatively preserved neurological function, though some may experience lower limb weakness, bowel or bladder dysfunction, or tethered cord syndrome over time. Cranial meningoceles may be associated with hydrocephalus or other central nervous system anomalies. The condition can occur in isolation or as part of broader syndromic presentations. Treatment is primarily surgical, involving repair of the defect to prevent infection (such as meningitis), cerebrospinal fluid leakage, and further neurological deterioration. Surgical closure is typically performed in the neonatal period. Prognosis is generally favorable compared to myelomeningocele, particularly when the neural tissue is not involved. Long-term follow-up is important to monitor for complications such as tethered cord, hydrocephalus, or progressive neurological deficits. Folic acid supplementation before and during early pregnancy has been shown to significantly reduce the risk of neural tube defects, including meningocele.

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Oct 2022A Study of Vibegron in Pediatric Participants 2 Years to Less Than (<) 18 Years of Age With NDO and on CIC

Urovant Sciences GmbH — PHASE2, PHASE3

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Meningocele.

View clinical trials →

No actively recruiting trials found for Meningocele at this time.

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

Search ClinicalTrials.gov ↗Join the Meningocele community →

Specialists

2 foundView all specialists →
MK
Mohamed K Kamel
Specialist
PI on 1 active trial11 Meningocele publications
MM
Mahmoud A Mohamed
Specialist
PI on 1 active trial85 Meningocele publications

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 Meningocele.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Meningocele

Disease timeline:

New recruiting trial: A Study of Vibegron in Pediatric Participants 2 Years to Less Than (<) 18 Years of Age With NDO and on CIC

A new clinical trial is recruiting patients for Meningocele

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.

Common questions about Meningocele

What is Meningocele?

Meningocele is a type of neural tube defect (NTD) in which the meninges (the protective membranes surrounding the brain and spinal cord) protrude through a defect in the vertebral column or skull, forming a sac filled with cerebrospinal fluid. Unlike myelomeningocele, the spinal cord and nerve roots are not contained within the herniated sac, which generally results in a milder clinical presentation. Meningocele can occur along any part of the spine but is most commonly found in the lumbosacral region. It may also occur in the cranial region (cranial meningocele). The condition is typically de

How is Meningocele inherited?

Meningocele follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Meningocele typically begin?

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

Which specialists treat Meningocele?

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