Maryellen Kelly, assistant professor, has been named co-investigator on the CDC grant for the National Spina Bifida Patient Registry. Duke has one of the largest spina bifida clinics in the country and offers to patients in the clinic enrollment to the registry and complete annual follow up. The registry is a patient registry for spina bifida being carried out at 22 sites across the country with over 7000 enrolled patients. The main objectives of the registry are: 1) create a clearer current picture of the health of spina bifida patients across the country; 2) better describe the demographics of Americans living with spina bifida; 3) assess the care being delivered at spina bifida 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 spina bifida; 5) identify opportunities for future collaborative research; and 6) potentially develop national standards of care for individuals with spina bifida.