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

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。然而，长期的健康结果是有限的，实践 模式各不相同，最佳做法也没有明确界定。小门罗卡雷尔的脊柱裂项目。儿童 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的骨科和泌尿外科项目为本研究设定了以下目标：1）接近每一个 符合条件的患者在我们的计划招募，2）贡献纵向数据的健康状况，临床护理， 5年研究期间同意NSBPR的患者的结局，以及3）评价NSBPR数据 回答关于脊柱裂预后的假设性问题。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和脊柱裂计划 在NSBPR和其他国家数据库中进行生产性研究的证明记录。公布业绩 这项研究将有助于为脊柱裂的最佳实践临床指南提供信息。

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.