for researchers

Spina Bifida Research

The Spina Bifida Association advocates for research to improve the lives of people living with Spina Bifida.

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, and that led to the development of the the Spina Bifida Community-Centered Research Agenda.

SBA’s Community-Centered Research Agenda identifies research opportunities to improve health outcomes for people living with Spina Bifida.

SBA facilitates research working groups focused on six topics:

  1. Bowel Incontinence
  2. Mental Health
  3. Self-Management
  4. Transition
  5. Urinary Incontinence
  6. Weight Management

Contact [email protected] if you’re interested in getting involved.