Comp B-National Spina Bifida Registry-Lurie Children's Hospital

比较 B-国家脊柱裂登记处-卢里儿童医院

• 批准号: 8822098
• 负责人: Robin Bowman
• 金额: $ 5.97万
• 依托单位: LURIE CHILDREN'S HOSPITAL OF CHICAGO
• 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/8822098
• 关键词: Comp; National; Spina; Bifida; Registry

DESCRIPTION (provided by applicant): Spina Bifida (SB) is a complex, congenital abnormality that affects many different organ systems in those afflicted. Currently, there are 70,000 people living in the United States with SB.1 In 2008, a National Spina Bifida Patient Registry (NSBPR) was established through funding from the Centers for Disease Control and Prevention (CDC) to better study the disease and what impacts the outcome for those affected. The purpose of the registry is to provide a mechanism for multi-disciplinary SB clinics, caring for patients with SB throughout the U.S., to collect long-term health information. This longitudinal data set allows all interested health care providers to evaluate the outcome of different practice patterns, compare these outcomes amongst different treatment centers, and then establish best practice recommendations. Dr. Robin Bowman (PI) was funded for this NSBPR from 9/1/2011-8/31/2014. The purpose of the proposed research is to continue the collection of health information, through the NSBPR, of longitudinal data on children and adults with SB. These results will then be analyzed and best practices can be implemented. With standardization of treatment amongst all health care providers and a focus on the outcome of patients living with SB, the lasting impact of the registry will be improved health and wellness in the population of patients living with this complex medical illness.

描述（由申请人提供）：脊柱裂（SB）是一种复杂的先天性异常，会影响患者的许多不同器官系统。目前，美国有 70,000 名 SB.1 患者。2008 年，美国疾病控制与预防中心 (CDC) 资助建立了国家脊柱裂患者登记处 (NSBPR)，以更好地研究这种疾病以及影响患者结果的因素。注册的目的是为多学科 SB 诊所提供一种机制，照顾 全美范围内的 SB 患者，收集长期健康信息。该纵向数据集允许所有感兴趣的医疗保健提供者评估不同实践模式的结果，比较不同治疗中心的这些结果，然后建立最佳实践建议。 Robin Bowman 博士（PI）于 2011 年 9 月 1 日至 2014 年 8 月 31 日期间获得了本次 NSBPR 的资助。拟议研究的目的是通过 NSBPR 继续收集 SB 儿童和成人纵向数据的健康信息。然后将分析这些结果并实施最佳实践。随着所有医疗保健提供者的治疗标准化以及对 SB 患者治疗结果的关注，登记的持久影响将改善患有这种复杂疾病的患者群体的健康状况。