Oregon Spina Bifida Registry Project-Comp B

项目摘要/摘要 脊柱裂是美国最常见的永久性致残出生缺陷 并且需要复杂和长期的医疗护理。加强对护理的理解 脊柱裂计划的实践和对健康结果的关注将改善结果 以及脊柱裂患者的生活质量。来自其他方面的证据 复杂和慢性疾病表明，全国脊柱裂患者登记处 允许比较护理中心之间的结果数据，并确定 改善结果的战略。年脊柱裂协会的评估 与其他团体的合作确定了需要国家基础设施来支持 改善患者护理质量的临床研究和系统方法 脊柱裂。该项目将促进继续执行和完善 全国脊柱裂患者登记。OHSU的称谓系统有着悠久的历史 照顾脊柱裂患者，包括参与国家登记工作 这个项目建立在经验的基础上，包括系统的 临床数据的收集和评估。 该项目有助于建立有关当前健康状况的临床证据库。 在脊柱裂护理和健康结果方面的实践；需要这些证据来帮助 制定和通过了护理脊柱裂患者的国家标准 可以应用于缩小不同诊所之间的差距和改善健康结果， 美国的人口和地区。此应用程序的主要目标是扩展 参与国家脊柱裂患者登记通过利用 标准化登记工具，用于收集脊柱裂患者的数据。一个完整的 脊柱裂患者数据的来源将使比较治疗和 人群的结果并确定未来研究的领域，以指导最佳临床 实践并改善脊柱裂患者的生活。续 参与该项目将强调持续收集有关参与的数据 病人。此外，项目人员将与其他地点的专业人员合作 参加登记处，分析已获得的数据并传播调查结果。

PROJECT SUMMARY/ABSTRACT Spina bifida is the most common permanently disabling birth defect in the United States and requires complex and long-term medical care. Enhanced understanding of care practices of spina bifida programs and about health outcomes will improve outcomes and quality of life experiences for persons living with spina bifida. Evidence from other complex and chronic conditions has shown that a National Spina Bifida Patient Registry allows for comparison of outcome data among care centers and identification of strategies to improve outcomes. Assessment by the Spina Bifida Association in collaboration with other groups identified need for a national infrastructure to support clinical research and a systematic approach to improving quality of care for people with spina bifida. This project will facilitate continued implementation and refinement of a national spina bifida patient registry. OHSU has a long history of addressing systems of care for people with spina bifida, including participation in the national registry efforts since their inception, and this project builds on experience that includes systematic collection and evaluation of clinical data. This project contributes to building the clinical evidence base about current health practices in spina bifida care and health outcomes; this evidence is needed to aid development and adoption of national standards of care for people with spina bifida that can be applied to reduce disparities and improve health outcomes across clinics, populations, and regions of the US. The primary objective of this application is to extend participation in the National Spina Bifida Patient Registry via utilization of the standardized registry tool to collect data from patients with spina bifida. A complete source for spina bifida patient data will make it possible to compare treatments and outcomes of populations and identify areas for future research to guide best clinical practices and improve the lives of persons living with spina bifida. Continued participation in the project will emphasize ongoing collection of data on participating patients. Further, project personnel will collaborate with professionals at other sites participating in the registry to analyze obtained data and disseminate findings.