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Findings from the National Spina Bifida Patient Registry

Initial Findings from the National Spina Bifida Patient Registry

For the first time, the Centers for Disease Control and Prevention (CDC) reports findings from the National Spina Bifida Patient Registry. The Registry collects information to better understand the association between surgeries or medical procedures and health outcomes. The data come from children and adults who receive care at one of 19 spina bifida clinics participating in the Registry. The findings reported here focus on basic information about patients with spina bifida who attend specialized clinics in the United States. More detailed findings will be shared as this research continues.

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 clinic research to help people living with spina bifida.

Type of Spina Bifida (percentages are rounded)

81%  Myelomeningocele
19%  Non-myelomeningocele (including lipomyelomeningocele, fatty filum terminale, and meningocele)
(Based on 3,740 registry participants from 19 clinics)

Learn more about myelomeningocele and meningocele »
Learn more about lipomyelomeningocele » 
Learn more about fatty filum terminale »

Type of Spina Bifida based on 3740 registry patients from 19 clinics.


52% female
48% male
(Based on 3,738 registry participants from 19 clinics)

Gender based on 3738 registry patients from 19 clinics, Female 52%, Male 48%


65% Non-Hispanic White
21% Hispanic or Latino
 7% Non-Hispanic Black
 7% Other (Asian, Native Hawaiian, other Pacific Islander, American Indian, Alaskan Native)
(Based on 3,740 registry participants from 19 clinics)

Rece/Ethnicity based on 3738 registry patients from 19 clinics.


54% community ambulators
29% non-ambulators
 9% household ambulators
 8% therapeutic ambulators
(Based on 3,379 registry participants from 19 clinics)

 

Mobility Status: Based on 3379 registry participants from 19 clinics


64% incontinent
36% continent

Urinary continence is defined here as dry during the day, with or without intervention (medication, equipment, or other aids). The majority (95.8 %) of those continent said that they use clean intermittent catheterization for bladder management. These numbers are based on 2,481 Registry participants, aged 5 and older with impaired bladder function, from 19 clinics.

Urinary Continence Status: Incontinent 64%, Continent 36%


61% incontinent
39% continent
Bowel continence is defined here as no event of involuntary stool leakage during the day, with or without intervention (medication, equipment, or other aids). These numbers are based on 2,265 Registry participants, aged 5 and older with impaired bowel function, from 19 clinics.

Bowel continence status: Incontinent 61%, Continent 39%

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