Component C. Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE Protocol)

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Abstract The Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE Protocol) goal is to implement and evaluate a urologic protocol for young children with spina bifida through the collection of data and careful study of results, to optimize the long term renal health of these patients. This proposal aims to: 1) Implement and evaluate the UMPIRE Protocol for young children with spina bifida, 2) Support standardization of the documentation of urology test results, 3) Conduct high quality, collaborative research projects with other sites, and 4) Improve the care and outcomes for SB patients at CHLA. Spina bifida affects about 1600 of the approximately 3.8 million babies born in the country each year, resulting from incomplete closure of the neural tube and protrusion of the spinal membrane at 28 days gestation, and includes myelomeningocele, lipomeningocele and meningocele. In myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation, neurogenic bowel, neurogenic bladder, decreased mobility and lack of sensation in lower extremities, and cognitive dysfunction. Patients with neurogenic bladder are at high risk of developing recurrent urinary tract infections, reflux nephropathy and in extreme cases if untreated, renal failure. In addition, children with neurogenic bladder often suffer from significant incontinence of urine that effects social functioning. These impairments can have significant impact on day-to-day living and can interfere with school, work and other community activities. Realizing the importance of renal insufficiency and survival has been pivotal to improved quality of life and life expectancy. The UMPIRE Protocol is an important vehicle for understanding and preventing primary and secondary conditions associated with SB, in particular, those related to renal function. Research resulting from the protocol can help to identify best practices that can be universally adopted by the community of SB clinics, thereby leading to improved care for all patients. Achievement of project goals will serve to increase scientific knowledge about the population through improved clinical care resulting from identification of best practices through robust research efforts. Our goal is to improve the care, quality of life, long term health and full inclusion in all elements of community life for this important population.