Component B. National Spina Bifida Patient Registry (NSBPR)

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Abstract The goal of this project is to continue to participate in the National Spina Bifida Patient Registry. This proposal aims to: 1) collect data for inclusion in the SB Registry including health status, interventions and outcomes, to better understand the needs of the population, improve the quality of care and optimize health; 2) contribute to the body of knowledge about the SB population through the conduct of high quality, collaborative research, utilizing existing Registry data; and 3) improve the clinical care and outcomes for patients with spina bifida cared for in the CHLA Spina Bifida Program. Spina bifida affects about 1600 of the approximately 3.8 million babies born in the country each year; an estimated 160,000 people in the United States are currently living with the condition (myelomeningocele, lipomeningocele and meningocele). In myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation, neurogenic bowel and/or bladder resulting in incontinence, muscle weakness and lack of sensation in lower extremities, and cognitive dysfunction. These impairments can have significant impact on day-to-day living and can interfere with school, work and other community activities. Given the myriad symptoms that can be present in SB, the condition can have a significant impact on quality of life. The National Spina Bifida Patient Registry is an important vehicle for understanding and preventing primary and secondary conditions associated with SB, potentially leading to improved health, reduced health care costs and improved quality of life. Research resulting from the use of Registry data can help to identify best practices that can be universally adopted by the community of SB clinics, thereby leading to improved care for all patients. Achievement of project goals will serve to increase scientific knowledge about the population through continued enrollment of patients, and improve clinical care resulting from identification of best practices through robust research efforts. Our goal is to improve the care, quality of life, long term health and full inclusion in all elements of community life for this important population.