Spina Bifida Registry Project

脊柱裂登记项目

• 批准号: 8531673
• 负责人: Elizabeth jane Adams
• 金额: $ 6.97万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-30 至 2014-08-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8531673
• 关键词: Spina; Bifida; Registry; Project; 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 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 Registry Longitudinal Data Collection and Evaluation project 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 three related specific aims. First, we will continue to collect and share specific registry information on at least 125 patients with spina bifida annually. Second, we will evaluate the use of registry information for specific programmatic clinical quality improvement projects. After testing the utility of registry information for informing clinical improvement projects at OHSU, we will develop a manual that details how other clinics may use registry information to inform these types of projects. Finally, to improve sustainability of collecting and sharing registry information, we will test methods of integrating the documentation of this information into routine clinical practice within OHSU's legacy electronic medical records. Further, we will explore methods of electronically extracting registry information from the electronic medical record.

项目摘要/摘要 脊柱裂是美国和 需要复杂而长期的医疗服务。增强对脊柱护理实践的了解 Bifida计划和健康成果将改善成果和生活质量经验 与脊柱裂的人在一起。来自其他复合和慢性条件的证据表明 国家患者登记处允许比较护理中心之间的结果数据 确定改善结果的策略。 Spina Bifida Association评估 与其他团体的合作，确定需要国家基础设施以支持临床研究 以及一种系统的方法，可以改善脊柱裂的人的护理质量。这个项目将 促进国家患者注册中心的持续发展和实施。 OHSU有很长的 为脊柱裂的人提供护理系统的历史，该项目基于 经验包括系统收集和评估临床数据。 该项目有助于建立有关当前健康实践的临床证据的基础 脊柱裂和健康成果；需要这些证据来帮助发展民族 脊柱裂的人的护理标准可以应用于减少差异和改善 美国诊所，人口和地区的健康成果。这是这个的主要目标 申请是要扩大参与国家脊柱裂登记处的纵向数据收集 和评估项目通过使用标准注册表工具来收集患者的数据 脊柱裂。 Spina Bifida患者数据的完整来源将成为可能的比较 人口的治疗和结果，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。继续参与 项目将强调三个相关的特定目标。首先，我们将继续收集和分享特定的 注册表每年至少有125例脊柱裂面的信息。第二，我们将评估 使用注册表信息进行特定的程序化临床质量改进项目。后 测试注册表信息的效用以告知OHSU的临床改进项目，我们将 制定一本详细说明其他诊所如何使用注册表信息来告知这些类型的手册 项目。最后，为了提高收集和共享注册表信息的可持续性，我们将测试 将这些信息的文档整合到常规临床实践中的方法 OHSU的传统电子病历。此外，我们将以电子方式探索 从电子病历中提取注册表信息。