ArticleThe Journal of pediatrics2015
The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics.
Article in The Journal of pediatrics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 53 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
53 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida.The Journal of urology · 2016Guideline
- Therapeutic outcomes and predictive factors of intradetrusor onabotulinumtoxinA for neurogenic detrusor overactivity (NDO) associated with spinal cord lesion.International urology and nephrology · 2026Article
- Incidence, management, follow-up and long-term outcomes of spinal dysraphism in a cohort of diverse origins and cultures: a 17-year cohort study.BMC pregnancy and childbirth · 2026Article
- Mediating Effects of Family and Clinical Characteristics on the Quality of Life of Children With Spina Bifida and Their Parents.Journal of advanced nursing · 2026Article
- Effects of a Standing Program for Ambulatory Children with Myelomeningocele: A Single-Subject Design.Healthcare (Basel, Switzerland) · 2025Article
- Role of urodynamics in predicting fecal incontinence in spina bifida and spinal cord injury patients.Pediatric surgery international · 2025Observational
- Perspectives of Young Men With Spina Bifida on Fertility Potential and Future Parenthood.Urology · 2025Article
- Clinical profile of Korean children with spina bifida: a single-center prospective cohort study.BMC pediatrics · 2024Article
- Analysis of a newly developed multidisciplinary program in the Middle East informed by the recently revised spina bifida guidelines.Journal of pediatric rehabilitation medicine · 2024Article
- Body Composition and Energy Expenditure in Youth With Spina Bifida: Protocol for a Multisite, Cross-Sectional Study.JMIR research protocols · 2024Article
- Perioperative management of patients with spina bifida.BJA education · 2024Review
- State of the Art Bowel Management for Pediatric Colorectal Problems: Spinal Anomalies.Children (Basel, Switzerland) · 2023Review
- What has changed in pediatric neurosurgical care in spina bifida? A 30-year UAB/Children's of Alabama observational overview.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Article
- Foot deformity and quality of life among independently ambulating children with spina bifida in South Korea.BMC pediatrics · 2023Article
- Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study.BMC nursing · 2023Article
- Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.Journal of pediatric rehabilitation medicine · 2023Article
- Cecostomy tubes improve bowel continence for pediatric patients with spina bifida: A retrospective analysis of outcomes from a single clinic.Journal of pediatric rehabilitation medicine · 2023Article
- Article
- Association between age of starting clean intermittent catheterization and current urinary continence in individuals with myelomeningocele.Journal of pediatric urology · 2022Article
- Pressure injuries are common in children with myelomeningocele: Results from a follow-up programme and register.Acta paediatrica (Oslo, Norway : 1992) · 2022Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectiveTo 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
designReported 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.
resultsThe 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.
conclusionThe 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.
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