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: 8816337
• 负责人: Stacy T Tanaka
• 金额: $ 6.02万
• 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/8816337
• 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）：医疗服务的进展增加了患有脊柱裂的婴儿的寿命，这是美国最常见的永久性无性先天缺陷。但是，长期健康结果有限，实践模式变化，最佳实践尚未得到很好的定义。疾病预防控制中心已经证明了国家脊柱裂登记处（NSBPR）的可行性。范德比尔特（MCJCHV）的Monroe Carell小儿童医院的Spina Bifida计划每年评估200多名脊柱裂。 MCJCHV的神经外科手术，骨科和泌尿外科计划已经为本研究设定了以下目标：1）与我们的入学计划中的每个符合条件的患者联系，2）2）为健康状况，临床护理和结果贡献纵向数据，并在五年内对NSBPR的同意患者进行评估，以评估NSBPR，以评估NSBPR数据，以评估NSBPR数据，以评估nsbpr数据。脊柱裂脊虫病患者的识别和管理以及随着患者从青春期过渡到成年的患者的健康差异。 PI以及临床研究协调员将确保对提交给CDC的数据的质量控制。 PI和高级/关键人员与其他国家数据库和联邦资助的赠款有了有效研究的记录。这项研究的发表结果将有助于为脊柱裂的最佳实践临床指南提供信息。