Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component

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。然而，长期的健康结果是有限的，实践 模式各不相同，最佳实践没有得到很好的定义。小门罗·卡雷尔的脊柱裂项目。儿童的 范德比尔特医院(MCJCHV)每年评估250多名脊柱裂患者。神经外科， MCJCHV的整形外科和泌尿外科课程为这项研究设定了以下目标：1)接近每一个 我们计划中符合条件的患者，2)提供有关健康状况、临床护理和 在五年的研究期内，同意患者接受NSBPR的结果，以及3)评估NSBPR数据 回答关于脊柱裂治疗结果的假设驱动的问题。血管内皮细胞瘤与临床研究 协调员将确保对提交给疾控中心的数据进行质量控制。PI和脊柱裂计划 NSBPR和其他国家数据库的卓有成效的研究记录。公布的结果 这项研究将有助于为脊柱裂的最佳实践提供临床指南。

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. However, long-term health outcomes are limited, practice patterns vary, and best practices are not well defined. The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates over 250 patients with spina bifida each year. The neurosurgery, orthopaedics, and urology programs 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 health status, clinical care, and outcomes for consented patients to the NSBPR over the five year study period, and 3) to evaluate NSBPR data to answer hypothesis-driven questions about outcomes in spina bifida. The PI along with the clinical research coordinator will ensure quality control of data submitted to the CDC. The PI and the Spina Bifida Program have a demonstrated record of productive research with the NSBPR and other national databases. Published results from this study will help to inform best practice clinical guidelines for spina bifida.