Long-term health outcomes of people living with spina bifida
Funds continued data collection on spina bifida patients and a study testing a urology care protocol for young children.
Spina bifida is a birth defect affecting the spine, and its most serious form, myelomeningocele, can also damage a child's urinary and kidney systems as they grow. Doctors still lack solid long-term data on how people with spina bifida fare over decades, and there's no settled, tested protocol yet for protecting a young child's kidneys while the condition is managed.
This cooperative agreement fu…
Continued longitudinal data collection on children and adults with spina bifida through National Spina Bifida Patient Registry clinics (Component A), and implementing and evaluating the UMPIRE urologic management protocol for infants and young children aged 0-10 with myelomeningocele (Component B).
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