This proposal is in response to RFA-DD-19-001: Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida (SB), and we are applying for Component B: National Spina Bifida Patient Registry. SB is the most common permanently disabling birth defect, with an estimated 160,000 people in the United States currently living with this condition. The care of patients with SB is complex, and requires coordination of a variety of specialists. In the United States, an estimated 96 clinics provide care for patients with SB. However, there are differences in interventions and outcomes among clinics. The NSBPR was created to collect and study a large pool of longitudinal data on interventions, clinical outcomes and the quality of care of people with SB across various clinics from the US. SB care and research have a long history at BCH, dating to the late 1970’s when Drs. Alan Retik and Stuart Bauer established the first SB clinic in New England. Over the ensuing decades, the clinic steadily grew, and in 2012 we were awarded a competitive internal “Center” designation, resulting in the BCH Center for Spina Bifida and Spinal Cord Conditions. Because of our relatively large SB population of approximately 800 patients, our established track record of innovative treatments, surgeries, and diagnostic procedures, and our demonstrated commitment as a non-funded site for last several years, we propose that the BCH SBC be a funded site in the NSBPR. As a new funded site, the BCH SBC will achieve the following aims: first, expand the enrollment numbers in the NSBPR and approach each eligible patient in our program. Specifically, our goal is to enroll and submit data on 600 patients with SB over the next five years. Second, enhance longitudinal data collection on health status, clinical care, and outcomes for consented patients to the NSBPR over a five-year study period. Third, utilize NSBPR data and state-of-the-art clinical research methods to answer hypothesis-driven questions that align with the research priorities of the SB community. Our data represent a significant portion of New England’s SB population, and it will be a valuable contribution to the NSBPR regarding studying differences in interventions and outcomes among clinics and determining the best practices for people with SB. In addition, our center will bring new state-of-the-art clinical research methods to address essential and unanswered research questions that are relevant to improving our understanding of SB and its management across the lifespan of individuals with SB.