Advances in medical care have increased longevity for babies born with spina bifida, the most common permanently disabling birth defect in the United States. The main goals of the urologist participating in the care or patients with spina bifida are: 1) to preserve normal renal function and 2) to ensure adequate bladder continence for enhancing self-esteem and independence. Despite these common goals, practice patterns vary, and best practices are not well defined. The CDC has demonstrated the feasibility of a National Spina Bifida Patient Registry (NSBPR). A Urologic Management to Preserve Renal Function Protocol (UPPF) has also been designed to evaluate outcomes on a standardized urologic protocol from the neonatal period to 5 years of age. The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates approximately 20 newborns with spina bifida each year. In partnership with the neonatal intensive care unit, all the pediatric urologists at MCJCHV have set the following goals for this study: 1) to approach each eligible patient in our program for enrollment, 2) to contribute longitudinal data on diagnostic studies and interventions as specified by the protocol, and 3) to evaluate data from the NSBPR and UPPF to answer hypothesis-driven questions specifically about clinical predictors for hostile videourodynamics and decreased renal function. The PI along with the clinical research coordinator will ensure quality control of data submitted to the CDC. The PI and senior/key personnel have a demonstrated record of productive research with other national databases and federally funded grants. Published results from this study will help to inform best practice clinical guidelines for urologic management in the child with spina bifida
Spina bifida, the most common permanently disabling birth defect in the United States, can have negative effects on bladder and kidney function. Although the main goal of urologic care in spina bifida patients is to preserve normal renal function, the best strategy for evaluation and treatment during childhood is not well understood with a fine balance between too many tests and interventions versus late recognition of a treatable problem. By contributing the urologic data from our Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt to the Urologic Management to Preserve Renal Function Protocol (UPPF) and by using the national registry data to answer questions about best and most efficient treatment, we hope to improve both health care utilization and outcomes for spina bifida patients.
|Routh, Jonathan C; Cheng, Earl Y; Austin, J Christopher et al. (2016) 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. J Urol 196:1728-1734|