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.
This proposal uses a computerized tool and data-processing system developed by the Spina Bifida Association for use by the CDC as a way to collect national data on individuals with Spina Bifida. Potential future research ideas are also presented which incorporate data from the research registry in a proposed study on the impact of preventative models of care on medical outcomes, health care utilization, and cost.