title: The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics.
abstract: OBJECTIVE
  To use data from the US National Spina Bifida Patient Registry (NSBPR) to describe variations in Contexts of Care, Processes of Care, and Health Outcomes among individuals with spina bifida (SB) receiving care in 10 clinics.
  
  
  METHODS
  Reported here are baseline cross-sectional data representing the first visit of 2172 participants from 10 specialized, multidisciplinary SB clinics participating in the NSBPR. We used descriptive statistics, the Fisher exact test, χ(2) test, and Wilcoxon rank-sum test to examine the data.
  
  
  RESULTS
  The mean age was 10.1 (SD 8.1) years with slightly more female subjects (52.5%). The majority was white (63.4%) and relied upon public insurance (53.5%). One-third had sacral lesions, 44.8% had mid-low lumbar lesions, and 24.9% had high lumbar and thoracic lesions. The most common surgery was ventricular shunt placement (65.7%). The most common bladder-management technique among those with bladder impairment was intermittent catheterization (69.0%). Almost 14% experienced a pressure ulcer in the last year. Of those ages 5 years or older with bowel or bladder impairments, almost 30% were continent of stool; a similar percentage was continent of urine. Most variables were associated with type of SB diagnosis.
  
  
  CONCLUSIONS
  The NSBPR provides a cross section of a predominantly pediatric population of patients followed in specialized SB programs. There were wide variations in the variables studied and major differences in Context of Care, Processes of Care, and Health Outcomes by type of SB. Such wide variation and the differences by type of SB should be considered in future analyses of outcomes.
authors.affiliation: University of Wisconsin-Milwaukee, Milwaukee, WI; Milwaukee/Children's Hospital of Wisconsin, Milwaukee, WI. Electronic address: sawin@uwm.edu.
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Sawin
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, GA.
authors.forename: Tiebin
authors.initials: T
authors.lastname: Liu
authors.affiliation: Carter Consulting, Inc, Consultant to Centers of Disease Control and Prevention, Atlanta, GA.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Ward
authors.affiliation: Milwaukee/Children's Hospital of Wisconsin, Milwaukee, WI.
authors.forename: Judy
authors.initials: J
authors.lastname: Thibadeau
authors.affiliation: Children's Hospital of Richmond, Virginia Commonwealth University, Richmond, VA.
authors.forename: Michael S
authors.initials: MS
authors.lastname: Schechter
authors.affiliation: Division of Healthcare Quality Promotion, Centers for Disease Control and Prevention, Atlanta, GA.
authors.forename: Minn M
authors.initials: MM
authors.lastname: Soe
authors.affiliation: Division of Healthcare Quality Promotion, Centers for Disease Control and Prevention, Atlanta, GA.
authors.forename: William
authors.initials: W
authors.lastname: Walker
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D012042:Registries; D016135:Spinal Dysraphism / Q000150:complications / Q000601:surgery; D014481:United States; D055815:Young Adult