CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

项目摘要 这个项目是我们参与国家脊柱裂患者登记的延续 测试利用标准化登记册工具收集数据的可行性的示范项目 脊柱裂患者的数据，以了解更多的人口，并改善护理。的 国家脊柱裂患者登记处（NSBPR）是一个持续的项目，旨在改善 在美国，通过建立 在临床环境中的纵向数据收集。该项目的具体成果是 收集脊柱裂门诊患者的纵向数据;描述特征 研究人群的比例及其与诊所所有脊柱裂患者和人群的可比性 脊柱裂;使用数据来建立结果之间的关联， 干预措施;人口变量和其他因素;确定最佳做法;建立 质量指标;比较参与诊所之间的结果;并作为 为未来的研究或项目提供信息。

Project Abstract This project is a continuation of our participation in the National Spina Bifida Patient Registry Demonstration Project to test the feasibility of utilizing a standardized registry tool for collecting data of patients with spina bifida, to learn more about the population, and improve care. The continuing project, National Spina Bifida Patient Registry (NSBPR), is aimed at improving the care of the individuals with spina bifida in the United States through establishment of longitudinal data collection in the clinic setting. The specific outcomes of this project are to collect longitudinal data on patients seen in the spina bifida clinics; describe the characteristics of the study population and its comparability to all spina bifida patients in the clinic and persons with spina bifida generally; use the data to establish the association between outcomes, interventions; demographic variables, and other factors; identify best practices; establish measures of quality; compare outcomes among participating clinics; and serve as a source of information for future research or projects.