Comp B-Oregon Spina Bifida Registry Project

描述(申请人提供)：脊柱裂是美国最常见的永久性致残出生缺陷，需要复杂和长期的医疗护理。加强对脊柱裂计划护理实践和健康结果的了解，将改善脊柱裂患者的结局和生活质量。来自其他复杂和慢性疾病的证据表明，全国脊柱裂患者登记处允许比较各护理中心的结果数据，并确定改善结果的策略。脊柱裂协会与其他团体合作进行的评估发现，需要一个国家基础设施来支持临床研究，并采取系统的方法来提高脊柱裂患者的护理质量。该项目将促进继续开发和实施国家病人登记系统。OHSU在解决脊柱裂患者的护理系统方面有很长的历史，这个项目建立在包括系统收集和评估临床数据在内的经验基础上。该项目有助于建立关于脊柱裂护理的当前健康实践和健康结果的临床证据基础；需要这些证据来帮助制定脊柱裂患者的国家护理标准，该标准可用于缩小美国诊所、人口和地区之间的差距和改善健康结果。该应用程序的主要目标是通过使用标准化的登记工具来收集脊柱裂患者的数据，从而扩大参与国家脊柱裂患者登记的范围。脊柱裂患者数据的完整来源将使人们能够比较治疗和结果，并确定未来研究的领域，以指导最佳临床实践和改善脊柱裂患者的生活。继续参与该项目将强调两个具体目标。首先，我们将继续每年收集和分享符合条件的脊柱裂患者的具体登记信息。第二，我们将带头开展一项调查 5-18岁青年患者开始清洁间歇导尿的年龄与当前尿控状态之间的关系。

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.