Comp B-Primary Children's Hospital Spina Bifida Patient Registry

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DESCRIPTION (provided by applicant): This funding opportunity is to determine what constitutes best practices for people with spina bifida and to influence the provision care. Through component B, longitudinal data will continue to be collected and used to compare differences in interventions and outcomes among participating programs. This is critical in addressing the public health impact of spina bifida and necessary improvements in population health. Current research is limited in addressing and evaluating advances over the last 10 to 15 years. Defining best practices and outcomes through a patient registry has the potential of changing conjectures to documented clinical outcomes, advancing the health and independence of individuals with spina bifida The Spina Bifida program at Primary Children's Hospital provides a multidisciplinary clinic to meet complex needs of individuals with spina bifida in Utah and surrounding states, Wyoming, Idaho, Nevada, and Montana. The program consistently enrolls 18 infants with open spina bifida each year and 10 with closed lesions. Unique patient visits each year average 214 with 35 new patients. We are a pediatric tertiary facility of a major healthcare agency, which provides a robust data set for linkage. The Spina Bifida Program has been involved in the current NSBPR providing data on 344 new patients and 540 follow up annual reports. The goal of involvement in the NSBPR is to improve care at our center and at a national level through comparative effective research for which the NSBPR was designed to facilitate.