Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) at Texas Children's Hospital/Baylor College of Medicine

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Project Summary Spina bifida (SB) is the most common permanently disabling birth defect in children.1 In the United States alone, more than 150,000 people live with SB and its long-term debilitating effects on multiple organ systems including the urinary tract. For the urologic management of newborns with SB, preservation of the upper urinary tracts and thus avoiding permanent loss of renal function via appropriate bladder management has been a key management goal for pediatric urologists and SB healthcare providers. Newborns with SB are generally placed on an observation protocol that includes serial urinary tract imaging and urodynamics, as well as treatment options such as clean intermittent catheterization (CIC) and anticholinergic medications. This promotes detrusor muscle relaxation and development by bladder cycling and ensures bladder drainage in efforts to protect the upper urinary tract and prevent hydronephrosis.2 However, the outcomes of this management are poorly documented, especially in patients who are presumed at low risk for renal damage, and there is a lack of consensus on the timing of serial imaging/tests and the timing of when interventions such as CIC and anticholinergics are introduced in SB management of the newborn. Moreover, prospective, longitudinal data for these patients does not exist with respect to renal function, as well as, quality of life measures (e.g. urinary/fecal incontinence), making evaluation of the efficacy of any management protocol difficult. The long-term goal of this project is to improve the clinical management of pediatric patients with SB. The objective is to continue implementation and evaluation of the Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol for Young Children with Spina Bifida that was developed at the CDC, ultimately leading to a standardized management protocol of efficient and effective urinary tract care in newborns and young children with SB that preserves renal function for at least the first five years of life and beyond. Our central hypothesis is that this standardized management protocol will establish effective clinical management that preserves long-term renal function, promote efficient use of health care resources, and reduce the morbidity of current treatment algorithms. The rationale for the proposed research is that research validated standardized management protocols in other clinical areas such as cystic fibrosis and congenital heart conditions have improved clinical outcomes and cost effectiveness of healthcare delivery.22,23 Texas Children's Hospital/Baylor College of Medicine has been a leading site for the UMPIRE protocol since 2015 testing the central hypothesis and coming closer to the objective of this proposal by pursuing the specific aim of continued participation as a CDC registry site that will monitor and evaluate the UMPIRE Protocol for young children with SB. Due to the large and unique population at our institution, enrollees to the national registry will include prenatal closure patients and ethnically diverse patients including those with Hispanic backgrounds.