Research Approaches to Improve the Care and Outcomes of

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Purpose The overall purpose of this FOA is to identify and facilitate the provision of effective clinical care and needed educational/informational resources for people living with SB. This FOA is comprised of three (3) components: • Component A solicits applications to implement a plan to develop and implement the infrastructure for Spina Bifida Clinical Care Monitoring and Tracking (CCMT). The system will monitor, track and evaluate patterns of care provided in SB clinics with the goal of improving and standardizing care through evidence-based effectiveness analysis. This plan will result in a CCMT that coordinates communication between SB clinics and SB chapters, provides input into research priorities for the NSBPR, and advocates for the adoption of best practices identified via the NSBPR and the UPPF as well as by other avenues. • Component B solicits applications to continue the collection of longitudinal data on children and adults with SB. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among clinics and to propose hypotheses to develop and test using NSBPR data. • Component C solicits applications to implement and evaluate a best practice protocol that can move toward an evidence-based protocol to manage the urinary system in infants and young children with SB so that kidney function is preserved as a positive health outcome. Applicants applying for this component of the FOA must also apply for component B. Only applicants funded under Component B will be considered for funding under Component C.

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