Woodward CDC NSBPR Registry 2018

伍德沃德 CDC NSBPR 登记处 2018

• 批准号: 10350536
• 负责人: JASON F WOODWARD
• 金额: $ 8万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10350536
• 关键词: Woodward; CDC; NSBPR; Registry; 2018

PROJECT SUMMARY/ABSTRACT Spina bifida is the most common complex congenital disorder and has significant impact on health and quality of life. Although life expectancy has improved for individuals with spina bifida, they continue to experience high rates of morbidity, low rates of community participation, high health care costs, and for some, lower reported quality of life. Multidisciplinary spina bifida clinics provide comprehensive, coordinated, family-centered, best quality care with the goal of promoting the highest level of health, quality of life, independence, and community participation across the lifespan. High quality evidence to guide these clinics and other providers in providing the most effective clinical care is limited and a wide variation in care practices exists among clinics. Therefore, there is a critical need to identify and disseminate evidence-based, standardized clinical care practices that result in early identification of common complications, timely delivery of cost-effective interventions, and optimal outcomes and quality of life across the lifespan. The National Spina Bifida Patient Registry (NSBPR) was established by the Centers for Disease Control and Prevention in 2008 to pinpoint and disseminate best care practices through longitudinal data collection, analysis, and dissemination of findings. However, variation in care and health outcomes still exist across multidisciplinary clinics. This proposal aims to advance the mission of the CDC’s National Center on Birth Defects and Developmental Disabilities to improve the health of children and adults by promoting health and wellness among children and adults with disabilities. The objective of this proposal is to identify and disseminate best practices in spina bifida clinical care through improved NSBPR longitudinal data collection and analysis and linkage of NSBPR with additional electronic health record (EHR) clinical and administrative data. We aim to 1) identify the clinical care practices associated with best health outcomes for people living with spina bifida by expanding NSBPR collection to adults, developing standardized data collection procedures, and increasing linkages between NSBPR and EHR data. We will 2) advance the evidence base by leveraging our experience implementing standardized care algorithms and our NSBPR/EHR data linkages to characterize the frequency of sleep disordered breathing (SDB) and the frequency of associated symptoms of SDB in individuals with spina bifida. We also aim to 3) evaluate the potential of a standardized manual muscle testing care algorithm implemented by an interdisciplinary team in the first year of life to predict ambulation at age 5. By investigating the above aims, our team is poised to improve the quality and utilization of the NSBPR data across multidisciplinary clinics with the purpose of identifying best clinical care practices that prevent complications and promote optimal health, functional independence, community participation, and quality of life for children and adults with spina bifida.

项目摘要/摘要 脊柱裂是最常见的复杂先天性疾病，对健康和质量有重大影响 生活。尽管对于脊柱裂的人来说，预期寿命有所改善，但他们继续经历很高 发病率，社区参与率低，医疗保健费用较低，而对于某些人来说，报道的较低 生活质量。多学科脊柱裂诊所提供全面，协调，以家庭为中心，最佳 优质护理的目标是促进最高水平的健康，生活质量，独立性和社区 整个生命周期的参与。高质量的证据指导这些诊所和其他提供商提供 最有效的临床护理是有限的，诊所之间存在很大的护理实践。所以， 迫切需要识别和传播基于证据的，标准化的临床护理实践 导致早期确定常见并发症，及时提供具有成本效益的干预措施以及 整个生命周期的最佳结果和生活质量。国家脊柱裂片患者注册中心（NSBPR） 是由2008年疾病控制与预防中心建立的，以确定和传播最佳 通过纵向数据收集，分析和调查结果传播的护理实践。但是，变化 在多学科诊所中，医疗和健康成果仍然存在。该建议旨在推进 CDC国家出生缺陷和发育障碍国家中心的任务，以改善 儿童和成人通过促进残疾儿童和成人的健康和健康。目标 该提议的内容是通过改进来识别和传播脊柱裂bifida临床护理的最佳实践 NSBPR纵向数据收集以及NSBPR的分析和链接以及其他电子健康记录 （EHR）临床和行政数据。我们的目标是1）确定与最佳相关的临床护理实践 通过将NSBPR收集扩展到成年人，开发的NSBPR收藏品，为患有脊柱裂的人带来健康成果 标准化的数据收集程序，并增加NSBPR和EHR数据之间的联系。我们将2） 通过利用我们实施标准化护理算法和我们的经验来提高证据基础 NSBPR/EHR数据链接以表征睡眠障碍呼吸的频率（SDB）和 脊柱裂的个体中SDB相关症状的频率。我们还旨在3）评估 跨学科团队实施的标准化手动肌肉测试算法的潜力 预测5岁救护车的生命的第一年。通过调查上述目标，我们的团队被中毒 提高多学科诊所NSBPR数据的质量和利用，目的 确定最佳的临床护理实践，以防止并发症并促进最佳健康，功能 脊柱裂儿童和成人的独立性，社区参与和生活质量。