Comp B-Oregon Spina Bifida Registry Project

Comp B-俄勒冈州脊柱裂登记项目

• 批准号: 8817113
• 负责人: KURT A FREEMAN
• 金额: $ 6.01万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8817113
• 关键词: Comp; Oregon; Spina; Bifida; Registry

DESCRIPTION (provided by applicant): 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 development and implementation of a national patient registry. OHSU has a long history of addressing systems of care for people with Spina bifida, 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 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 utilizatio 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 emphasiz two specific aims. First, we will continue to collect and share specific registry information on al eligible patients with Spina bifida annually. Second, we will spearhead a project investigating the association between age of initiating clean intermittent catheterization and current urinary continence status among youth enrollees ages 5-18 years.

描述（由申请人提供）：脊柱裂是美国最常见的永久性出生缺陷，需要复杂而长期的医疗服务。增强对脊柱裂计划和健康成果的护理实践的了解将改善脊柱裂的人的成果和生活质量经验。来自其他复杂和慢性状况的证据表明，国家脊柱裂病患者注册处可以比较护理中心之间的结果数据，并确定改善预后的策略。 Spina Bifida Association的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，并采用系统的方法来改善脊柱裂的人的护理质量。该项目将促进国家患者登记处的持续发展和实施。 OHSU在针对脊柱裂的人的护理系统方面有悠久的历史，该项目以系统收集和评估临床数据为基础。该项目有助于建立有关脊柱裂和健康成果中当前健康实践的临床证据。需要此证据来帮助开发脊柱裂的人的国家护理标准，以减少差异和改善美国诊所，人口和地区的健康状况。该应用程序的主要目的是通过标准注册表工具的fiturizatio来扩展参与国家脊柱裂片的患者注册中心，以收集脊柱裂病患者的数据。 Spina Bifida患者数据的完整来源将使您可以比较人群的治疗和结果，并确定未来研究的领域，以指导最佳临床实践并改善Spina Bifida的人的生活。继续参与该项目将强调两个具体目标。首先，我们将继续收集并共享有关每年有合格的脊柱bifida患者的特定注册表信息。其次，我们将带头一个调查项目的项目 在5-18岁的青年参与者中，启动清洁间歇性导管插入年龄与当前的泌尿持续状态之间的关联。