Spina Bifida Patient Registry Demonstration Project

脊柱裂患者登记示范项目

• 批准号: 7615173
• 负责人: Elizabeth jane Adams
• 金额: $ 4万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-09-30 至 2011-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7615173
• 关键词: Spina; Bifida; Patient; Registry; Demonstration

DESCRIPTION: (Provided by applicant.) Spina bifida is the most common permanently disabling birth defect in the United States. Medical care for people with spina bifida (PWSB) can be complex and long term. Improved understanding about care practices of spina bifida programs and about health outcomes associated with clinical practices is needed to improve outcomes and quality of life for PWSB. OHSU has a long history of addressing systems of care for PWSB, and this project builds on experience that includes systematic collection and evaluation of clinical data. 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 PWSB. This project takes a step towards a national patient registry. The long-term goal of this project is to improve health outcomes and quality of life for PWSB. This project contributes to building the clinical evidence base about current health practices in spina bifida care and health outcomes; this evidence is needed aid development of national standards of care for PWSB that can be applied to reduce disparities and improve health outcomes across clinics, populations and regions of the US. The objective of this application is to test the feasibility of utilizing a standardized registry tool to collect data from patients with spina bifida and to implement the tool to collect patient data. A complete source for spina bifida patient data will make it possible to compare treatment care and outcomes of populations and identify areas for future research to guide best clinical practices and improve the lives of PWSB. The feasibility of utilizing a standardized registry tool for collecting data on patients with spina bifida will be addressed by collecting data from 125 patients in our clinic every year for 3 years, using the data collection tool provided for this project. We will also assess how easy it is to use these forms in a clinical setting, and to integrate use into existing data collection systems. The goal of this project is to improve the health and quality of life of people with spina bifida. It addresses the "Healthy People 2010" priority area of disability and secondary conditions and is aligned with NCBDDD's performance goal to improve the health and development of all people with disabilities or potentially disabling conditions. It implements steps to establish the foundation for a National Spina Bifida Patient Registry, which will ultimately be applied to improve care and health of people with spina bifida.

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。脊柱裂（PWSB）的患者的医疗服务可能是复杂而长期的。需要提高人们对脊柱裂计划的护理实践以及与临床实践相关的健康结果的了解，以改善PWSB的结局和生活质量。 OHSU在解决PWSB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。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。 Spina Bifida Association的评估与其他小组合作，确定需要国家基础设施支持临床研究，并采用系统的方法来改善PWSB的护理质量。该项目朝着国家患者登记处迈出了一步。该项目的长期目标是改善PWSB的健康成果和生活质量。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。这些证据是需要帮助开发PWSB国家护理标准的，该标准可用于减少差异和改善美国诊所，人口和地区的健康状况。本应用的目的是测试利用标准化注册表工具从脊柱裂片患者那里收集数据并实施收集患者数据的工具的可行性。 Spina Bifida患者数据的完整来源将使您可以比较治疗护理和人群的结果，并确定未来研究的领域，以指导最佳临床实践并改善PWSB的生活。使用为该项目提供的数据收集工具，使用标准化的注册表工具收集脊柱裂的患者数据的可行性将通过从我们诊所的125名患者收集数据来解决。我们还将评估在临床环境中使用这些表格并将使用整合到现有数据收集系统中的容易性。该项目的目的是改善脊柱裂的人的健康和生活质量。它解决了残疾和次要状况的“健康人”的优先领域，并与NCBDDD的绩效目标保持一致，以改善所有残疾人或潜在残疾状况的健康和发展。它实施了为国家脊柱裂登记处建立基础的步骤，该注册中心最终将用于改善脊柱裂的人的护理和健康。