This funding opportunity is to determine what constitutes best practices for people with spina bifida and to influence the provision care. Through component B, longitudinal data will continue to be collected and used to compare differences in interventions and outcomes among participating programs. This is critical in addressing the public health impact of spina bifida and necessary improvements in population health. Current research is limited in addressing and evaluating advances over the last 10 to 15 years. Defining best practices and outcomes through a patient registry has the potential of changing conjectures to documented clinical outcomes, advancing the health and independence of individuals with spina bifida The Spina Bifida program at Primary Children's Hospital provides a multidisciplinary clinic to meet complex needs of individuals with spina bifida in Utah and surrounding states, Wyoming, Idaho, Nevada, and Montana. The program consistently enrolls 18 infants with open spina bifida each year and 10 with closed lesions. Unique patient visits each year average 214 with 35 new patients. We are a pediatric tertiary facility of a major healthcare agency, which provides a robust data set for linkage. The Spina Bifida Program has been involved in the current NSBPR providing data on 344 new patients and 540 follow up annual reports. The goal of involvement in the NSBPR is to improve care at our center and at a national level through comparative effective research for which the NSBPR was designed to facilitate.
Spina Bifida is a well-known, complex congenital defect. It is estimated that 166,000 individuals are living in the United States of America with Spina Bifida. Multidisciplinary clinics have traditionally been developed to provide comprehensive care to individuals with Spina Bifida. Clinical research continues to be needed to critically evaluate and improve care to individuals with Spina Bifida. The current funding opportunity is to determine what constitutes the best practices for people with Spina Bifida and to influence the provision of that care. The Spina Bifida Program/Clinic at Primary Children's Hospital, Salt Lake City, Utah seeks participation in Component B of the funding opportunity to continue data collection and research to describe best practices using the NSBPR (National Spina Bifida Patient Registry). The Program will continue to collect longitudinal data on children and adults (18 years - 21 years) to determine best practices and collaborate with other centers to evaluate various interventions and outcomes. The Spina Bifida Program/Clinic at Primary Children's Hospital, Salt Lake City, Utah piloted a registry tool prior to becoming part of the NSBPR in 2011. Members of the program have had increasing experience in the use and understanding of the registry process. Study personnel have had the opportunity to recognize benefits in evaluating variances in care and the development of research projects. It is anticipated that continuation of collection of longitudinal data will provide greater opportunities to study differences in interventions and outcomes among clinics and determining best practices for people with Spina Bifida.
|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|
|Routh, Jonathan C; Joseph, David B; Liu, Tiebin et al. (2017) Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry. J Pediatr Rehabil Med 10:303-312|
|Routh, Jonathan C; Cheng, Earl Y; Austin, J Christopher et al. (2016) Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida. J Urol 196:1728-1734|