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

项目摘要 医疗保健的进步增加了出生时患有脊柱裂的婴儿的寿命， 永久性残疾的出生缺陷在美国。泌尿科医生参与护理的主要目标 或脊柱裂患者：1）保持正常的肾功能和2）确保足够的膀胱 提高自尊和独立性的方法。尽管有这些共同的目标，但实践模式各不相同， 最佳实践也没有得到很好的定义。保留初始肾功能的泌尿外科管理方案 （UMPIRE）旨在评估新生儿期标准化泌尿系统方案的结局 到10岁。小门罗卡雷尔的脊柱裂项目。范德比尔特儿童医院（MCJCHV） 每年评估大约20名患有脊柱裂的新生儿。MCJCHV小儿泌尿科 为本研究设定了以下目标：1）接近我们项目中的每例合格患者进行入组，2） 提供方案规定的诊断研究和干预措施的纵向数据，以及3） 评估来自UMPIRE的数据，以回答假设驱动的问题，特别是关于临床预测因子的问题， 视频尿动力学异常和肾功能下降PI沿着临床研究协调员将 确保提交给CDC的数据的质量控制。PI有一个富有成效的研究证明记录 裁判。这项研究的结果将有助于为泌尿外科的最佳实践临床指南提供信息。 小儿脊柱裂的治疗

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