The Spina Bifida Association advocates for research to improve the lives of people living with Spina Bifida. This advocacy has yielded the National Spina Bifida Patient Registry (NSBPR) and the Urologic Protocol for Young Children with Spina Bifida, both housed at the Centers for Disease Control (CDC).
In collaboration with nearly 100 health care professionals around the world, SBA facilitated an update of Guidelines for the Care of People Living with Spina Bifida. This process included the identification of research gaps that will be prioritized by the Spina Bifida community, including adults with Spina Bifida and families of children with Spina Bifida.
These research gaps will be used to develop SBA’s research agenda, advocate for funding, and encourage the use of the data from the NSBPR.