Findings from the National Spina Bifida Patient Registry
The National Spina Bifida Patient Registry collects information from patients to better understand the associations between medical procedures and health outcomes. From 2009-2018, these data were collected from children and adults who received care at a spina bifida clinic participating in the Registry. See our map of the Registry sites and Frequently Asked Questions to find out more about this research.
CDC manages the Registry, and partners with spina bifida patient organizations to share research findings with families, doctors, nurses, and other healthcare professionals. CDC is the only organization in the United States conducting this broad, multi-site, clinical research to help people living with spina bifida.
Please see our list of all published research from the National Spina Bifida Patient Registry.
Type of spina bifida

Based on 10,253 Registry participants
- 78% Myelomeningocele
- 22% Non-myelomeningocele (including lipomyelomeningoceleexternal icon, fatty filum terminaleexternal icon, meningocele, split cord malformationexternal icon, terminal myelocystoceleexternal icon
Level of Lesion

Functional level of lesion
Based on 10,251 Registry participants
- 15% Thoracic
- 9% High-Lumbar
- 27% Mid-Lumbar
- 16% Low-Lumbar
- 32% Sacral
Mobility Status

Based on 9,462 Registry participants aged 2 years and older
- 56% community
- 8% household
- 6% therapeutic
- 29% non-ambulators
Rounded numbers do not equal 100%.
Skin Breakdown by Type of Spina Bifida

Based on 10,253 Registry participants
- Among Registry participants with myelomeningocele, 28% had a history of skin breakdown.
- Among Registry participants with non-myelomeningocele, 12% had a history of skin breakdown.
Skin breakdown education materials (English and Spanish)external icon
Bladder Continence by Type of Spina Bifida

- Among Registry participants ages 5 years and older with myelomeningocele, 39% are continent of bladder.
- Among Registry participants ages 5 years and older with non-myelomeningocele, 62% are continent of bladder.
Bowel Continence by Type of Spina Bifida

- Among Registry participants ages 5 years and older with myelomeningocele, 52% are continent of bowel.
- Among Registry participants ages 5 years and older with non-myelomeningocele, 73% are continent of bowel.
Insurance Type

Based on 9,545 Registry participants at last visit
- 47% Any private insurance; patients may have reported more than one source of insurance coverage.
- 47% Public insurance only
- 2% Supplementary insurance only
- 3% Supplementary insurance and public insurance
- 1% Uninsured