National Spina Bifida Patient Registry-Clinic Demonstration Project

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DESCRIPTION (provided by applicant): This proposal aims to establish a feasible site of data collection through the use of a standardized registry tool and a shared computerized reporting and data-processing system developed by the SB Association of America for use by the CDC as a national SB (SB) patient registry. The University of Pittsburgh Medical Center (UPMC) Adult SB Clinic and SB Transition Clinic as well as the Pediatric SB Clinic at Children's Hospital of Pittsburgh will jointly recruit patients for this project. At least 125 patients per year over a 3 year period will be recruited. Potential future research aims are also proposed which will use data obtained from the registry in a study to evaluate the impact of an evidence-based Wellness Program on medical outcomes, cost of care, and health care utilization through a unique partnership with UPMC Health Plan, a major health insurance services division.