Research & Clinical Care
The Spina Bifida Association champions research initiatives aimed at enhancing outcomes for everyone living with Spina Bifida.
Our commitment to research has produced two significant national resources now managed by the Centers for Disease Control and Prevention (CDC): the National Spina Bifida Patient Registry and the Urologic Protocol for Young Children with Spina Bifida.
Research agenda & guidelines
In partnership with approximately 100 healthcare professionals worldwide, the Association facilitated a comprehensive update of the Guidelines for the Care of People with Spina Bifida. During this process, the community identified and prioritized research gaps — captured in the Spina Bifida Community-Centered Research Agenda.
Lifespan Bowel Management Protocol
To address neurogenic bowel challenges, the Association launched the Lifespan Bowel Management Protocol (LBMP), providing “effective, evidence-based recommendations to assist healthcare professionals in making informed treatment decisions using available scientific data.”
Our research at work
National Spina Bifida Patient Registry
A national registry established at the CDC that helps compare outcomes across care settings.
Collaborative Care Network
A partnership of healthcare providers strengthening clinical services and guideline implementation.
Urologic Protocol
Specialized care guidelines for young children with Spina Bifida, now housed at the CDC.
Guidelines for the Care of People with Spina Bifida
Comprehensive, evidence-based care recommendations organized by age and topic.
Improving care across the lifespan
Through the Spina Bifida Collaborative Care Network, we strengthen clinical services by expanding provider relationships, ensuring guideline implementation, leveraging registry data to compare outcomes, and improving transition support from pediatric to adult care.
Partner with usHelp fund the next breakthrough
Your gift supports research into the complexities of Spina Bifida and evidence-based care for the community.