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.

For additional findings from the National Spina Bifida Patient Registry please see our list of all published research.

Age

Graph showing Age (in years) at last clinic visit, details above.

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

55% community ambulators, 8% household ambulators, 8% therapeutic ambulators, 29% non-ambulators. Based on 4,223 registry participants aged 2 years and older.

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

Skin Breakdown

Graph showing skin breakdown by type of spina bifida, details above.

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
Chart showing skin breakdown, details above

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 icon

Skin breakdown education materials (English and Spanish)external icon

Urinary Continence

Graph showing urinary continence status by type of spina bifida, details above.

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
Urinary Continence Status: Incontinent 66%, Continent 34%
  • 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

Graph showing Bowel Continence status by type of spina bifida, details above

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
Bowel Continence Status: Incontinent 70%, Continent 30%
  • 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

47% Any type of private insurance, 44% Public insurance only, 3% Supplementary insurance only, 6% Supplementary insurance and public insurance, 1% Uninsured

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