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

项目摘要/摘要 所有出生时患有脊柱裂(SB)的儿童都面临着终生健康问题的挑战。很多病人 患有这种疾病的人有与神经科、骨科和/或泌尿科相关的健康问题 条件。全国脊柱裂患者登记处(NSBPR)是一个始于#年的多机构登记处 2008年，收集了与某人同居的人的纵向数据。这项研究允许比较 不同机构之间不同治疗模式的结果。 拟议研究的目的是继续收集关于儿童和儿童的纵向数据 成年人通过NSBPR与某人在一起。有了这些纵向数据，我们将能够评估结果 不同的实践模式，比较这些结果在不同的治疗中心，然后 建立最佳实践建议。在所有医疗保健中实施最佳做法 提供者和关注与SB生活在一起的患者的结局，登记的持久影响将是 改善患有这种复杂疾病的患者的健康和健康状况。

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.