Spina Bifida Registry Project

脊柱裂登记项目

• 批准号: 8239958
• 负责人: Elizabeth jane Adams
• 金额: $ 5万
• 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 2014-06-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8239958
• 关键词: Spina; Bifida; Registry; Project

DESCRIPTION (provided by applicant): SB is the most common permanently disabling birth defect in the US and requires complex and long-term medical care. Enhanced understanding of care practices of SB programs and about health outcomes will improve outcomes and quality of life experiences for persons living with SB. 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 SB 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 SB. 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 SB, 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 SB care and health outcomes; this evidence is needed to aid development of national standards of care for people with SB 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 SB Registry Longitudinal Data Collection and Evaluation project via utilization of the standardized registry tool to collect data from patients with SB. A complete source for SB 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 SB. 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 SB 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.

描述（由申请人提供）：SB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SB计划和健康成果的护理实践的了解将改善SB患者的成果和生活质量经验。来自其他复杂和慢性病的证据表明，国家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。 SB协会与其他小组合作的评估，确定需要国家基础设施支持临床研究和系统的方法来改善SB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在针对SB患者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SB护理和健康结果中当前健康实践的临床证据。需要此证据来帮助为有SB的患者制定国家护理标准，以减少差异并改善美国诊所，人口和地区的健康状况。该应用程序的主要目的是通过利用标准注册表工具来延长参与国家SB注册表纵向数据收集和评估项目，以收集从SB患者的数据。 SB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SB患者的生活。继续参与该项目将强调三个相关的特定目标。首先，我们将继续收集和共享至少125例SB患者的特定注册表信息。其次，我们将评估注册表信息用于特定程序化临床质量改进项目的使用。在测试了注册表信息以告知OHSU临床改进项目的效用之后，我们将制定一本手册，详细介绍其他诊所如何使用注册表信息来告知这些类型的项目。最后，为了提高收集和共享注册表信息的可持续性，我们将测试将该信息的文档整合到OHSU的传统电子病历中的常规临床实践中的方法。此外，我们将探索从电子病历中提取注册表信息的方法。