CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

CHLA 脊柱裂登记处纵向数据收集和评估

• 批准号: 8537127
• 负责人: Kathryn A. Navarette Smith
• 金额: $ 7万
• 依托单位: CHILDREN'S HOSPITAL OF LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-30 至 2014-08-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8537127
• 关键词: CHLA; Spina; Bifida; Registry; Longitudinal

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.

项目摘要