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

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.

Grant Number: 6U01DD001272-05M002
NIH Institute/Center: ALLCDC
Principal Investigator: Robin Bowman