Comp B-National SB Patient Registry at Vanderbilt Children's Hospital

Comp B-范德比尔特儿童医院国家 SB 患者登记处

• 批准号: 8915969
• 负责人: Stacy T Tanaka
• 金额: $ 3.9万
• 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/8915969
• 关键词: Comp; National; SB; Patient; Registry

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. However, long-term health outcomes are limited, practice patterns vary, and best practices are not well defined. The CDC has demonstrated the feasibility of a National Spina Bifida Patient Registry (NSBPR). The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates over 200 patients with spina bifida each year. The neurosurgery, orthopedics, 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 specifically about multi-disciplinary identification and management of tethered cord in spina bifida patients and about health disparities as patients transition from adolescence to adulthood. 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 spina bifida.

描述（由申请人提供）：医疗保健的进步延长了患有脊柱裂的婴儿的寿命，脊柱裂是美国最常见的永久性残疾出生缺陷。然而，长期的健康结果是有限的，实践模式各不相同，而且最佳实践也没有明确定义。 CDC 已经证明了国家脊柱裂患者登记处 (NSBPR) 的可行性。范德比尔特门罗卡瑞尔儿童医院 (MCJCHV) 的脊柱裂项目每年对 200 多名脊柱裂患者进行评估。 MCJCHV 的神经外科、骨科和泌尿科项目为本研究设定了以下目标：1) 接触我们项目中的每一位符合条件的患者进行登记，2) 在五年研究期间向 NSBPR 提供同意患者的健康状况、临床护理和结果的纵向数据，以及 3) 评估 NSBPR 数据，以回答专门关于多学科的假设驱动问题 脊柱裂患者脊髓栓系的识别和处理，以及患者从青春期过渡到成年时的健康差异。 PI 与临床研究协调员将确保提交给 CDC 的数据的质量控制。 PI 和高级/关键人员拥有其他国家数据库和联邦资助的赠款的富有成效的研究记录。这项研究发表的结果将有助于为脊柱裂的最佳实践临床指南提供信息。