2015
DOI: 10.1016/j.jpeds.2014.09.039
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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. Study design 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, χ2 test, and Wilcoxon rank-sum tes… Show more

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Cited by 127 publications
(72 citation statements)
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“…In a previous analysis, Sawin and colleagues analyzed continence rates among the first 10 clinics to participate in the NSBPR; they found that only 30% of SB patients reported themselves as being continent of stool [7]. However, this analysis did not examine whether patients undergoing ACE or colostomy procedures were more or less likely to identify themselves as “continent” compared to patients receiving medical management alone or no management.…”
Section: Discussionmentioning
confidence: 99%
See 1 more Smart Citation
“…In a previous analysis, Sawin and colleagues analyzed continence rates among the first 10 clinics to participate in the NSBPR; they found that only 30% of SB patients reported themselves as being continent of stool [7]. However, this analysis did not examine whether patients undergoing ACE or colostomy procedures were more or less likely to identify themselves as “continent” compared to patients receiving medical management alone or no management.…”
Section: Discussionmentioning
confidence: 99%
“…After institutional review board approval, participating clinics collected longitudinal data on individuals with SB [7,8]. Limited data were also collected on patients who were eligible but not enrolled (ENE) in the NSBPR.…”
Section: Methodsmentioning
confidence: 99%
“…In a population-based 2001–2002 survey of Arkansas families with children and adolescents with spina bifida, 24.5% had upper-level lesions, which did not vary significantly by age. 28,34 Unpublished cross-sectional data from the National Spina Bifida Patient Registry 35 indicate that upper-level lesions are very common among adolescents and adults with spina bifida born prior to 1999 and less common among younger children (R Valdez on behalf of the CDC National Spina Bifida Patient Registry team, personal communication, 2014).…”
Section: Discussionmentioning
confidence: 99%
“…Publications to date include a paper describing the methods to implement a registry to collect data [2]; a description of the initial registry participants [3]; an investigation of the association between sociodemographic characteristics and patient outcomes [4]; and identification of factors associated with mobility [5]. A description of the methods for developing and refining a urologic protocol for newborns and young children with spina bifida has also been published [6].…”
Section: Methodsmentioning
confidence: 99%