National Spina Bifida Patient Registry-Lurie Children?s Spina Bifida Center

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Project summary/Abstract All children born with spina bifida (SB) face a lifetime of challenging health concerns. Many patients suffering from this disease have health issues associated with neurologic, orthopedic, and/or urologic conditions. The National Spina Bifida Patient Registry (NSBPR) is a multi-institutional registry started in 2008 which collects longitudinal data on those persons living with SB. This study allows comparison of outcomes relative to different treatment paradigms across institutions. The purpose of the proposed research is to continue the collection of longitudinal data on children and adults with SB through the NSBPR. With this longitudinal data we will be able to evaluate the outcome of different practice patterns, compare these outcomes amongst different treatment centers, and then establish best practice recommendations. With best practices implemented among 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.