CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

项目摘要 该项目是我们参与全国脊柱裂患者登记工作的延续 测试利用标准化登记工具收集数据的可行性的示范项目 了解脊柱裂患者的资料，进一步了解人群，提高护理水平。这个 继续项目，国家脊柱裂患者登记(NSBPR)，旨在改善 美国脊柱裂患者的护理通过建立 临床环境中的纵向数据收集。该项目的具体成果是 收集脊柱裂诊所就诊患者的纵向数据；描述其特征 研究人群及其与所有临床和成人脊柱裂患者的可比性 通常是脊柱裂；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 质量衡量标准；在参与的诊所之间比较结果；并作为 未来研究或项目的信息。

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.