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.
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
1 eventUrovant Sciences GmbH — PHASE2, PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Meningocele.
View clinical trials →Clinical Trials
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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 Meningocele.
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Start the conversation →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
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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 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.