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

Comp C-范德比尔特儿童医院国家 SB 泌尿科方案

• 批准号: 8816281
• 负责人: Stacy T Tanaka
• 金额: $ 1.95万
• 依托单位: VANDERBILT UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8816281
• 关键词: Comp; National; SB; Urologic; Protocol

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

描述(由申请人提供)：医疗护理的进步增加了出生时患有脊柱裂的婴儿的寿命，脊柱裂是美国最常见的永久性致残出生缺陷。参与护理脊柱裂患者的泌尿科医生的主要目标是：1)保护正常的肾功能；2)确保足够的膀胱可控性，以增强自尊和独立性。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。疾控中心已经证明了建立全国脊柱裂患者登记系统(NSBPR)的可行性。尿路管理方案(UPPF)也被设计用来评估从新生儿期到5岁的标准化泌尿系统方案的结果。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。与新生儿重症监护病房合作，所有 MCJCHV的儿科泌尿科医生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进行登记；2)根据协议的规定提供关于诊断研究和干预的纵向数据；3)评估NSBPR和UPPF的数据，以回答假设驱动的问题，特别是关于恶意视频尿动力学和肾功能下降的临床预测因素。PI将与临床研究协调员一起确保提交给疾控中心的数据的质量控制。私营部门和高级/关键人员在利用其他国家数据库和联邦政府资助的赠款进行卓有成效的研究方面有良好的记录。这项研究发表的结果将有助于为脊柱裂儿童的泌尿外科治疗提供最佳实践临床指南。