Spina Bifida (SB) is a complex, congenital abnormality that affects many different organ systems in those afflicted. Currently, there are 70,000 people living in the United States with SB.1 In 2008, a National Spina Bifida Patient Registry (NSBPR) was established through funding from the Centers for Disease Control and Prevention (CDC) to better study the disease and what impacts the outcome for those affected. The purpose of the registry is to provide a mechanism for multi-disciplinary SB clinics, caring for patients with SB throughout the U.S., to collect long-term health information. This longitudinal data set allows all interested health care providers to evaluate the outcome of different practice patterns, compare these outcomes amongst different treatment centers, and then establish best practice recommendations. Dr. Robin Bowman (PI) was funded for this NSBPR from 9/1/2011-8/31/2014. The purpose of the proposed research is to continue the collection of health information, through the NSBPR, of longitudinal data on children and adults with SB. These results will then be analyzed and best practices can be implemented. With standardization of treatment amongst all health care providers and a focus on the outcome of patients living with SB, the lasting impact of the registry will be improved health and wellness in the population of patients living with this complex medical illness.
The National Spina Bifida Patient Registry (NSBPR) is a clinical study designed to record the medical/surgical care provided to patients living with spina bifida. Its purpose is to ascertain which treatment regimens yield the best long-term outcomes, as determined by health and wellness measures.