CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

描述（由申请人提供）：该项目是我们参与NSBPR示范项目的延续，旨在测试利用标准化登记工具收集SB患者数据的可行性，以了解更多有关人群的信息，并改善护理。持续的项目，NSBPR，旨在通过建立在临床环境中的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SB诊所患者的纵向数据;描述研究人群的特征及其与诊所所有SB患者和SB患者的可比性;使用数据建立结局、干预措施、人口统计学变量和其他因素之间的关联;确定最佳实践;建立质量措施;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.