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 were prioritized by the Spina Bifida community. To view this Research Agenda, click here .

To further support the management of bowel incontinence for those living with Spina Bifida and neurogenic bowel, SBA launched the Lifespan Bowel Management Protocol (LBMP). The Protocol includes effective, evidence-based recommendations to assist healthcare professionals in making informed treatment decisions using available scientific data.