Oregon Spina Bifida Registry Project-Comp B

俄勒冈州脊柱裂登记项目-Comp B

• 批准号: 10441065
• 负责人: KURT A FREEMAN
• 金额: $ 8万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10441065
• 关键词: Oregon; Spina; Bifida; Registry; Project

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.

项目摘要/摘要 脊柱裂是美国最常见的永久性出生缺陷 并且需要复杂而长期的医疗服务。增强对护理的理解 脊柱裂计划和健康成果的实践将改善结果 与脊柱裂的人的生活质量经验。来自其他的证据 复杂而慢性的状况表明国家脊柱裂病患者注册表 可以比较护理中心之间的结果数据并确定 改善结果的策略。 Spina Bifida Association评估 与其他团体合作，确定需要国家基础设施来支持 临床研究和一种系统的方法来改善患有患者的护理质量 脊柱裂。该项目将促进继续实施和完善 国家脊柱裂病患者注册中心。 OHSU有悠久的历史来解决 护理脊柱裂的人，包括参与国家注册表的工作 自成立以来，该项目建立在包括系统的经验基础上 收集和评估临床数据。 该项目有助于建立有关当前健康的临床证据基础 脊柱裂和健康成果的实践；需要这些证据来帮助 为脊柱裂的人制定和采用国家护理标准 可以应用于减少差异并改善诊所的健康状况， 人口和美国地区。该应用程序的主要目的是扩展 通过利用 标准化注册表工具，以从脊柱裂的患者那里收集数据。完整 脊柱裂的来源将使比较治疗和 人口的成果并确定未来研究的领域，以指导最佳临床 练习并改善脊柱裂的人的生活。持续 参与该项目将强调参与的持续收集 患者。此外，项目人员将与其他网站的专业人员合作 参与注册表以分析获得的数据并传播发现。