Comp C-National SB Urologic Protocol at Vanderbilt Children's Hospital

描述（由申请人提供）：医疗保健的进步延长了患有脊柱裂的婴儿的寿命，脊柱裂是美国最常见的永久性残疾出生缺陷。泌尿科医生参与脊柱裂患者护理的主要目标是：1)保持正常的肾功能；2)确保充分的膀胱自制，以增强自尊和独立性。尽管有这些共同的目标，实践模式各不相同，并且最佳实践没有很好的定义。美国疾病控制与预防中心已经证明了国家脊柱裂患者登记处（NSBPR）的可行性。泌尿系统管理以保持肾功能协议（UPPF）也被设计用于评估从新生儿期到5岁的标准化泌尿系统协议的结果。范德比尔特Monroe Carell Jr.儿童医院的脊柱裂项目（MCJCHV）每年评估大约20名患有脊柱裂的新生儿。与新生儿重症监护病房合作，所有的

DESCRIPTION (provided by applicant): 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