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，影响患者的许多不同器官系统。目前，美国有70,000名SB1患者。1 2008年，在疾病控制和预防中心(CDC)的资助下，美国成立了全国脊柱裂患者登记中心(NSBPR)，以更好地研究这种疾病以及对患者预后的影响。注册的目的是为多学科的SB诊所提供一种机制，照顾 美国各地的SB患者，收集长期的健康信息。这一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日为NSBPR提供资金。拟议研究的目的是继续通过NSBPR收集关于SB儿童和成人的纵向数据的健康信息。然后将分析这些结果，并可实施最佳做法。随着所有医疗保健提供者的治疗标准化，并将重点放在SB患者的结果上，登记的持久影响将是改善这种复杂疾病患者的健康和福祉。

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.