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, we 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 SB community.
These research gaps will be used to develop our research agenda, advocate for funding, and encourage the use of the data from the NSBPR.