National Spina Bifida Patient Registry-Lurie Children?s Spina Bifida Center

项目概要/摘要 所有出生时患有脊柱裂（SB）的儿童一生都面临着具有挑战性的健康问题。许多患者 患有这种疾病的患者具有与神经系统、整形外科和/或泌尿系统相关的健康问题 条件国家脊柱裂患者登记处（NSBPR）是一个多机构登记处， 2008年，收集了与SB生活在一起的人的纵向数据。 结果相对于不同的治疗范式跨机构。 拟议研究的目的是继续收集关于儿童的纵向数据， 成人SB通过NSBPR。有了这些纵向数据，我们将能够评估结果 不同的实践模式，比较不同治疗中心的结果，然后 提出最佳做法建议。在所有医疗保健机构中实施最佳做法 提供者和关注SB患者的结果，登记的持久影响将是 改善患有这种复杂医学疾病的患者的健康和福祉。

Project summary/Abstract All children born with spina bifida (SB) face a lifetime of challenging health concerns. Many patients suffering from this disease have health issues associated with neurologic, orthopedic, and/or urologic conditions. The National Spina Bifida Patient Registry (NSBPR) is a multi-institutional registry started in 2008 which collects longitudinal data on those persons living with SB. This study allows comparison of outcomes relative to different treatment paradigms across institutions. The purpose of the proposed research is to continue the collection of longitudinal data on children and adults with SB through the NSBPR. With this longitudinal data we will be able to evaluate the outcome of different practice patterns, compare these outcomes amongst different treatment centers, and then establish best practice recommendations. With best practices implemented among 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.