More than 166,000 Americans are living with Spina Bifida (SB), a congenital neurologic defect that can affect multiple organ systems in the fetus, growing child, and adult and is the most common permanently disability birth defect in the U.S. The National SB Patient Registry (NSBPR) was initiated in 2009 by the Centers for Disease Control and Prevention (CDC) to create a national network of SB clinics linked through a common registry to provide 1) a clearer current picture of the health of SB patients around the country, 2) better describe the demographics of Americans living with SB, 3) assess the care being delivered at SB clinics both individually and collectively across the country, 4) answer hypothesis-driven questions to assess the impact of clinical interventions upon the health and quality of life of individuals with SB, 5) identify opportunities for future collaborative research and 6) potentially develop national standards of care for individuals with SB. Duke University has been a site of data collection for the NSBPR since 2011, and enrolled 225 patients from its SB clinic in the first two years. Given the large size of our SB clinic, including a relatively lare proportion of adult patients, as well as our proven participation in activities related to furtherig the aims of the NSBPR as a whole, we believe that our continued participation in the NSBPR is important and likely to enhance its success. This project proposes to further expand enrollment in the NSBPR at our site, enhance the information collected in the NSBPR thus far by continuing to administer new, expanded questionnaires to our patients, continue to work with our colleagues at CDC to use the enhanced data to answer hypothesis-driven questions, coalesce simple data on demographics and urologic management for presentation to the urology community on a national level, and initiate additional studies investigating specific outcomes of urologic surgery in SB patients including urinary continence, patient independence, and ultimately renal function.
The National Spina Bifida Patient Registry (NSBPR) was established to create a national infrastructure to support clinical research and development of a systematic approach to improve quality of care for individuals with SB. In this application, the Duke site proposes to continue to recruit participants from its unique and substantial SB patient population.