Spina bifida is a major congenital anomaly of the spinal cord and the associated vertebrae. It has an incidence of roughly 1 per 1000 births and a current clinical prevalence of greater than 70,000 people in the United States. It is the most common birth defect that results in severe disability of multiple organ systems. The spinal cord lesion has numerous deleterious effects on the neurologic, orthopedic and urologic systems. Urological evaluation of infants with spina bifida begins at birth. Despite universal agreement on the importance of early urological management of the infant, for some years there has been a major controversy as to what form of management is most appropriate.
The aim of this research is, utilizing a well defined best practices protocol, to conduct a multi-institutional study over 5 years to determine the most appropriate form of urologic management in infants born with spina bifida. The purpose of the research is also to assess numerous functional outcome measures at the end of the study period including specific measurements of renal function and bladder dynamics.
The purpose of this project is to implement an already developed best practice urological protocol. This protocol will be utilized by 10 spina bifida clinics across the U.S. with the goal being to evaluate its outcomes on preserving renal function and the move toward an evidence-based protocol.