Comp C Spina Bifida Urologic Protocol at Vanderbilt Children's Hospital

项目总结

PROJECT SUMMARY 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 Urologic Management to Preserve Initial Renal Function Protocol (UMPIRE) has been designed to evaluate outcomes on a standardized urologic protocol from the neonatal period to 10 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. The pediatric urology division at MCJCHV has 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 UMPIRE 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 has a demonstrated record of productive research UMPIRE. Published results from this study will help to inform best practice clinical guidelines for urologic management in the child with spina bifida