CHLA Spina Bifida Registry Longitudinal Data Collection and Evaluation

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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.