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

描述（申请人提供）：脊柱裂（SB）是一种复杂的先天性异常，影响许多不同的器官系统在那些受苦。2008年，通过疾病控制和预防中心（CDC）的资助，建立了国家脊柱裂患者登记处（NSBPR），以更好地研究疾病以及影响患者结局的因素。登记册的目的是为多学科的SB诊所提供一个机制， 全美的SB患者，收集长期的健康信息。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结果，然后建立最佳实践建议。Robin Bowman博士（PI）从2011年9月1日至2014年8月31日获得了本NSBPR的资助。拟议的研究的目的是继续收集健康信息，通过NSBPR，纵向数据的儿童和成人与SB。这些结果将进行分析，并可以实施最佳做法。随着所有医疗保健提供者的治疗标准化以及对SB患者结局的关注，登记研究的持久影响将改善患有这种复杂医学疾病的患者人群的健康状况。

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.