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 2009-2021, 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 11,250 Registry participants
- 76% Myelomeningocele
- 24% Non-myelomeningocele (including lipomyelomeningocele, fatty filum terminale, meningocele, split cord malformation, terminal myelocystocele)
Skin Breakdown by Type of Spina Bifida
Based on 11,250 Registry participants
- Among Registry participants with myelomeningocele, 31% had a history of skin breakdown.
- Among Registry participants with non-myelomeningocele, 13% had a history of skin breakdown.
Bladder Continence by Type of Spina Bifida (regardless of impairment)*
- Among Registry participants ages 5 years and older with myelomeningocele, 35% are continent of bladder.
- Among Registry participants ages 5 years and older with non-myelomeningocele, 62% are continent of bladder.
*Bowel continence data is currently only reporting through 2019.
Bowel Continence among Impaired Individuals
Based on 6,016 Registry participants, ages 5 years and older with impaired bowel function. Continence is defined as dry during the day in the last month.
- 48% continent
- 52% incontinent
Bowel Continence Status by Type
- 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.