Comp B-Oregon Spina Bifida Registry Project

描述（由申请人提供）：脊柱裂是美国最常见的永久致残出生缺陷，需要复杂和长期的医疗护理。加强对脊柱裂项目的护理实践和健康结果的了解将改善脊柱裂患者的预后和生活质量。来自其他复杂和慢性疾病的证据表明，国家脊柱裂患者登记处允许在护理中心之间比较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确定需要一个国家基础设施来支持临床研究和一个系统的方法来提高脊柱裂患者的护理质量。该项目将促进国家患者登记处的持续发展和实施。OHSU在解决脊柱裂患者护理系统方面有着悠久的历史，该项目建立在包括系统收集和评估临床数据的经验基础上。该项目有助于建立有关脊柱裂护理和健康结果的当前卫生实践的临床证据基础；需要这些证据来帮助制定针对脊柱裂患者的国家护理标准，该标准可用于减少美国诊所、人群和地区之间的差异并改善健康结果。本应用程序的主要目的是通过利用标准化登记工具收集脊柱裂患者的数据，扩大国家脊柱裂患者登记的参与。脊柱裂患者数据的完整来源将使比较人群的治疗和结果成为可能，并确定未来研究的领域，以指导最佳临床实践，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所有符合条件的脊柱裂患者的具体注册信息。第二，我们将牵头开展一个项目

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.