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.
The goal of this project is to continue to collect data about patients with spina bifida utilizing a standardized registry tool for data collection within the Spina Bifida Center at Children's Hospital Los Angeles, in order to better understand the population, improve the quality of care for patients and families, and identify areas for future research. This project is relevant to public health priorities as its goal is to increase the understanding of the health status and health care of children and youth with spina bifida.