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

Age

Age in years at last clinic visit. Based on 10,253 Registry participants

• 8% younger than 2
• 12% 2 to <5
• 21% 5 to <10
• 12% 10 to <13
• 20% 13 to <18
• 11% 18 to <22
• 16% 22 or older

Race/Ethnicity

Based on 10,253 Registry participants

• 61% Non-Hispanic White
• 22% Hispanic or Latino
• 9% Other*
• 7% Non-Hispanic Black
• <1% Refused/Unknown

*Other includes Asian, Native Hawaiian, Other Pacific Islander, American Indian, and Alaskan Native.

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

Based on 10,253 Registry participants

• 25% had a history of skin breakdown
• 75% did not have a history of skin breakdown

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 among Impaired Individuals

Based on 6,054 Registry participants, age 5 years and older, with impaired bladder function. Continence is defined as dry during the day in the last month.

• 35% continent
• 65% incontinent

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 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 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