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 CDC has demonstrated the feasibility of a National Spina Bifida Patient Registry (NSBPR). The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates over 200 patients with spina bifida each year. The neurosurgery, orthopedics, 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 specifically about multi-disciplinary identification and management of tethered cord in spina bifida patients and about health disparities as patients transition from adolescence to adulthood. The PI along with the clinical research coordinator will ensure quality control of data submitted to the CDC. The PI and senior/key personnel have a demonstrated record of productive research with other national databases and federally funded grants. Published results from this study will help to inform best practice clinical guidelines for spina bifida.
Although spina bifida is the most common permanently disabling birth defect in the United States, long-term medical outcomes are limited, and best treatment throughout the person's lifetime is not well defined. The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt sees a large population of pediatric spina bifida patients. By contributing our data to the CDC National Spina Bifida Patient Registry (NSBPR) and by using the registry to answer questions about best and most efficient treatment, we hope to improve both health care utilization and outcomes for spina bifida patients.
|Liu, Tiebin; Ouyang, Lijing; Thibadeau, Judy et al. (2018) Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry. J Urol 199:837-843|