CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

描述（由申请人提供）：本项目是我们参与NSBPR示范项目的延续，旨在测试使用标准化注册工具收集SB患者数据的可行性，以了解更多人群，改善护理。正在进行的NSBPR项目旨在通过在临床环境中建立纵向数据收集来改善美国SB患者的护理。该项目的具体结果是收集在SB诊所就诊的患者的纵向数据；描述研究人群的特征及其与临床所有SB患者和一般SB患者的可比性；使用数据建立结果、干预措施之间的关联；人口统计变量和其他因素；确定最佳做法；建立质量衡量标准；比较参与诊所的结果；并作为未来研究或项目的信息来源。

DESCRIPTION (provided by applicant): This project is a continuation of our participation in the NSBPR Demonstration Project to test the feasibility of utilizing a standardized registry tool for collecting data of patients with SB, to learn more about the population, and improve care. The continuing project, NSBPR, is aimed at improving the care of the individuals with SB in the US 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 SB clinics; describe the characteristics of the study population and its comparability to all SB patients in the clinic and persons with SB 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.