Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component

项目总结

PROJECT SUMMARY Advances in medical care have increased longevity for babies born with spina bifida, the most common permanently disabling birth defect in the United States. However, long-term health outcomes are limited, practice patterns vary, and best practices are not well defined. The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates over 250 patients with spina bifida each year. The neurosurgery, orthopaedics, and urology programs at MCJCHV have set the following goals for this study: 1) to approach each eligible patient in our program for enrollment, 2) to contribute longitudinal data on health status, clinical care, and outcomes for consented patients to the NSBPR over the five year study period, and 3) to evaluate NSBPR data to answer hypothesis-driven questions about outcomes in spina bifida. The PI along with the clinical research coordinator will ensure quality control of data submitted to the CDC. The PI and the Spina Bifida Program have a demonstrated record of productive research with the NSBPR and other national databases. Published results from this study will help to inform best practice clinical guidelines for spina bifida.