CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

描述(由申请人提供)：这个项目是我们参与NSBPR示范项目的继续，目的是测试利用标准化登记工具收集SB患者数据的可行性，以了解更多关于人口的信息，并改善护理。正在进行的项目NSBPR旨在通过在诊所环境中建立纵向数据收集来改善对美国SB患者的护理。该项目的具体成果是收集在SB诊所看到的患者的纵向数据；描述研究人群的特征及其与临床上所有SB患者和一般SB患者的可比性；使用这些数据建立结果、干预措施、人口变量和其他因素之间的关联；确定最佳实践；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.