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

项目总结 医疗保健的进步延长了出生时患有脊柱裂的婴儿的寿命，脊柱裂是最常见的 在美国永久致残的出生缺陷。泌尿外科医生参与护理的主要目标 脊柱裂的患者有：1)保持正常的肾功能；2)保证充足的膀胱 增强自尊和独立性的节制。尽管有这些共同的目标，但练习模式各不相同， 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治疗方案 (裁判)的目的是评估新生儿时期的标准化泌尿外科方案的结果 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。妇幼保健院的儿科泌尿科 为这项研究设定了以下目标：1)接近我们计划中每一位符合条件的患者，2) 提供议定书规定的诊断性研究和干预措施的纵向数据，以及3) 评估来自裁判的数据，以回答假设驱动的问题，具体涉及以下临床预测因素 视频动力学异常和肾功能减退。私人助理将与临床研究协调员一起 确保对提交给疾控中心的数据进行质量控制。该协会有卓有成效的研究记录。 裁判。这项研究发表的结果将有助于为泌尿外科的最佳实践临床指南提供参考 儿童脊柱裂的处理

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