Overview
Malformation of the neurenteric canal, spinal cord, and column is a rare congenital condition that occurs during early embryonic development. During normal development, the neurenteric canal is a temporary connection between the developing gut (endoderm) and the developing nervous system (ectoderm). When this canal does not close or develop properly, it can lead to a range of structural abnormalities affecting the spinal cord, the spinal column (vertebrae), and sometimes the gastrointestinal tract. These malformations may include neurenteric cysts (fluid-filled sacs along the spine), split cord malformations (where the spinal cord is divided), vertebral anomalies such as butterfly vertebrae or hemivertebrae, and connections between the spinal canal and the gut. Symptoms depend on the specific structures involved and can range from back pain and neurological problems like weakness or numbness in the legs, to bowel or bladder dysfunction. Some patients may have visible skin abnormalities over the spine at birth, such as dimples, hair tufts, or fatty lumps. Treatment is primarily surgical and aims to remove cysts, release tethered spinal cord, and correct vertebral deformities when needed. Long-term follow-up with multiple specialists is important because some problems can develop or worsen as a child grows. The severity varies widely, from mild cases found incidentally to severe cases with significant neurological impairment.
Key symptoms:
Back pain or neck painWeakness in the legsNumbness or tingling in the limbsDifficulty walkingBowel control problemsBladder control problemsAbnormal curvature of the spine (scoliosis)Skin abnormalities over the spine such as dimples, hair tufts, or fatty lumpsRecurrent meningitis (in cases with gut-spinal connections)Stiffness or tightness in the legsAbnormally shaped vertebrae seen on imagingFluid-filled cyst along the spineTethered spinal cord symptoms that worsen with growth
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
1 eventWeill Medical College of Cornell University — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Malformation of the neurenteric canal, spinal cord and column.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for Malformation of the neurenteric canal, spinal cord and column.
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 Malformation of the neurenteric canal, spinal cord and column.
Community
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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.What specific type of spinal malformation does my child have, and how severe is it?,Is surgery recommended, and if so, what are the risks and expected outcomes?,How often will follow-up MRI scans and neurological exams be needed?,Are there signs I should watch for that would indicate the condition is getting worse?,Will my child need physical therapy, and what exercises can we do at home?,How might this condition affect my child's growth and development over time?,Is there a risk of recurrence after surgery, and what would that look like?
Common questions about Malformation of the neurenteric canal, spinal cord and column
What is Malformation of the neurenteric canal, spinal cord and column?
Malformation of the neurenteric canal, spinal cord, and column is a rare congenital condition that occurs during early embryonic development. During normal development, the neurenteric canal is a temporary connection between the developing gut (endoderm) and the developing nervous system (ectoderm). When this canal does not close or develop properly, it can lead to a range of structural abnormalities affecting the spinal cord, the spinal column (vertebrae), and sometimes the gastrointestinal tract. These malformations may include neurenteric cysts (fluid-filled sacs along the spine), split cor
How is Malformation of the neurenteric canal, spinal cord and column inherited?
Malformation of the neurenteric canal, spinal cord and column follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Malformation of the neurenteric canal, spinal cord and column typically begin?
Typical onset of Malformation of the neurenteric canal, spinal cord and column is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Malformation of the neurenteric canal, spinal cord and column?
Yes — 1 recruiting clinical trial is currently listed for Malformation of the neurenteric canal, spinal cord and column on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.