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

描述（由申请人提供）：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人患有sb1。2008年，在疾病控制和预防中心（CDC）的资助下，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预后的因素。注册的目的是提供一个机制，让多学科的SB诊所照顾

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.