Childrens Hospital Los Angeles Spina Bifida Registry

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DESCRIPTION: (Provided by applicant.) Spina Bifida Patient Registry Demonstration Project at Childrens Hospital Los Angeles The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at Childrens Hospital Los Angeles, in order to learn more about the population of children with spina bifida, to improve the quality of care for these patients, and to identify areas of future research. The hope for this demonstration project is the eventual creation of a universal data collection system for caregivers of children with spina bifida to standardize and improve care for these individuals nationally. Researchers at Childrens Hospital Los Angeles will contact children ages birth to 21 years and their parents when they visit the Spina Bifida Center. Families will be invited to enroll in the Center for Disease and Prevention funded Spina Bifida Patient Registry Demonstration Project. After informing the family of the project and receiving voluntary participation, the researchers will obtain parent consent and child assent. Enrolled patients' charts will be reviewed to identify and gather information for input into the registry, using the Spina Bifida National Patient Registry Tool. Target enrollment will be a minimum of 125 patients per year for 3 consecutive years. Information will be available for future research and quality improvement efforts. Spina Bifida Patient Registry Demonstration Project at Childrens Hospital Los Angeles The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at Childrens Hospital Los Angeles, in order to improve the quality of care for patients with spina bifida, and identify areas for future research. This project is relevant to public health by increasing the understanding of the health status and health care of children and youth with spina bifida. It is estimated that 70,000 people in the United States are currently living with spina bifida. By studying the health issues of this population, interventions and strategies can be identified to improve care and quality of life, and reduce health care costs.