Comp C-Improving the Care and Outcomes of People Living with Spina Bifida, Component C

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DESCRIPTION (provided by applicant): The urologic management of the newborn and young child with spina bifida is currently based on dogma and "expert opinion", a significant limitation when it comes to determining "best practice" standards. It is accepted that >90% of newborns with spina bifida have normal kidney function and normal appearing kidneys. If unattended; approximately 50% children encounter some degree of kidney compromise by the age of 5 years. There is a need for standardization of the urologic care of the newborn and young child with spina bifida using a management protocol that will protect kidney function and control harmful bladder function. The proposed Urologic Protocol for the Protection of Kidney Function in children with spina bifida from birth through the age of 5 years provides the opportunity to develop an evidenced based model for the care of children with a neurogenic bladder secondary to spina bifida. The desired outcome of the protocol is to preserve and protect normal kidney function while utilizing resources in a cost efficient fashion. The protocol follows the chld with spina bifida from birth through the first 5 years of life, their most vulnerable growth period Emphasis is placed on the initial newborn evaluation and the ability to predict which child is at risk for kidney damage. Children at risk are started on a combination of prescribed treatment plans that include intermittently catheterizing their bladder to eliminate urine and medications to help reverse harmful bladder effects on the kidney. Throughout the duration of the protocol, testing of bladder function is undertaken along with assessment of kidney function and appearance. Data is collected on an ongoing basis that will be sent electronically to the CDC for analysis. The protocol is created to be dynamic and alterations may occur if it becomes apparent those changes would improve kidney health. A successful outcome has universal appeal and the potential to standardize the care of children with neurogenic bladder dysfunction across all neuropathic disorders of which spina bifida makes up the greatest percent based on etiology. This becomes exceedingly important not only for the large centers caring for children with a neurogenically abnormal bladder but also for smaller centers that don't have the patient volume that would allow them to make any reasonable predictions on management based on their own data.