Findings from the National Spina Bifida Patient Registry

The National Spina Bifida Patient Registry collects information from patients to understand the associations between medical procedures and health outcomes. This data was collected from 2009 to 2016 from children and adults who received care at one of the spina bifida clinics participating in the Registry. Data from 2016 is not yet final. See our map of the Registry sites and Frequently Asked Questions 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.

Type of spina bifida

Based on 7,924 registry participants

• 78% Myelomeningocele
• 22% Non-myelomeningocele (including lipomyelomeningoceleExternal, fatty filum terminaleExternal, meningocele, split cord malformationExternal, terminal myelocystocele

Age

Based on 7,924 registry participants

Age (in years) at last clinic visit

• 8% younger than 2
• 13% 2 to <5
• 22% 5 to <10
• 11% 10 to <13
• 18% 13 to <18
• 11% 18 to <22
• 15% 22 or older

Mobility Status

Based on 7,291 registry participants aged 2 years and older

• 56% community
• 8% household
• 7% therapeutic
• 29% non-ambulators

Skin Breakdown

Based on 7,924 registry participants

• 24% had a history of skin breakdown
• 76% did not have a history of skin breakdown

Skin Breakdown by Type

Based on 7,924 registry participants

• Among registry participants with myelomeningocele, 27% had a history of skin breakdown.
• Among registry participants with non-myelomeningocele, 11% had a history of skin breakdown.

Learn more about skin breakdownExternal

Skin breakdown education materials (English and Spanish)External

Urinary Continence

Based on 6,235 registry participants, age 5 years and older with impaired bladder function. Continence is defined as dry during the day in the last month.

• 44% continent
• 56% incontinent

Urinary Continence Status by Type

• Among registry participants age 5 years and older with myelomeningocele, 60% are incontinent.
• Among registry participants age 5 years and older with non-myelomeningocele, 48% are incontinent.

Bowel Continence

Based on 6,235 registry participants, age 5 years and older with impaired bowel function. Continence is defined as frequency of stool incontinence over the last month, when not ill.

• 52% continent
• 48% incontinent

Bowel Continence Status by Type

• Among registry participants age 5 years and older with myelomeningocele, 53% are incontinent.
• Among registry participants age 5 years and older with non-myelomeningocele, 31% are incontinent.

Insurance Type

Based on 7,923 registry participants. Patients may have reported more than one type of insurance.

• 48% Any private insurance
• 46% Public insurance only
• 2% Supplementary insurance only
• 4% Supplementary insurance and public insurance
• 1% Uninsured