The purpose of this project is to: 1) capture patient data for the National SB Patient Registry, 2) contribute to the national project and identify research opportunities, and 3) establish a data base to ultimately enhance the development of evidence-based practice solutions in caring for children with SB and their families. If selected as a site, the Myelomeningocele Care Center at Children's Hospital of Michigan will recruit a minimum of 125 patients per year with continued longitudinal data collection in subsequent years. Using the standardized data collection form provided by the CDC, information will be collected during clinic visits and retrospective chart reviews. Data will be entered into the National SB Patient Registry database using an Electronic Medical Record (EMR) designed for SB clinics. Through participation on a Coordinating Committee, the direction of additional projects and research from this data will be explored.
Spina Bifida is the most common permanently disabling birth defect in the United States. In 2009 the estimated medical cost of care for the first year of life for a child with spina bifida was $52,415, lifetime medical cost was estimated at $420,923, and the social, emotional, and nonmedical costs estimated to be over $500,000. A National Spina Bifida Patient Registry will bring information together from across the U.S. so that we can begin to move forward on identifying the issues of greatest significance in the health and health care of this patient population, bring down medical costs, and improve the quality of life for spina bifida patients and their families.
