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

比较 B 范德比尔特儿童医院国家脊柱裂患者登记部分

• 批准号: 10441103
• 负责人: Douglass Brooks Clayton
• 金额: $ 8万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10441103
• 关键词: Comp; National; Spina; Bifida; Patient; Comp; National; Spina; Bifida; Patient

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.

项目摘要 医疗服务的进步增加了患有脊柱裂的婴儿的寿命，这是最常见的 在美国永久性禁用先天缺陷。但是，长期健康结果有限，实践 模式各不相同，最佳实践尚未很好地定义。 Monroe Carell Jr.儿童的Spina Bifida计划 范德比尔特（MCJCHV）的医院每年评估250多名脊柱裂。神经外科， MCJCHV的骨科和泌尿外科计划为这项研究设定了以下目标：1） 符合条件的患者入学计划，2）贡献有关健康状况，临床护理和的纵向数据 在五年研究期内，同意患者获得NSBPR的结果，以及评估NSBPR数据的结果 回答有关脊柱裂的结果的假设驱动的问题。 PI以及临床研究 协调员将确保对CDC提交的数据的质量控制。 PI和脊柱裂计划具有 NSBPR和其他国家数据库的生产研究记录。已发表的结果 从这项研究中，将有助于为脊柱裂的最佳实践临床指南提供信息。