Spina Bifida Community-Centered Research Agenda

History of the Spina Bifida Community-Centered Research Agenda 

When the Guidelines for the Care of People with Spina Bifida were updated in 2018, the Guidelines authors found more than 250 gaps in the understanding of Spina Bifida care that call for additional research. SBA developed a survey to identify topics where gaps exist that matter most to parents of children and adults with Spina Bifida, and convened a Research Advisory Council (comprised of parents of children with Spina Bifida, adults with Spina Bifida, clinicians, and researchers) to dig deeper into the topics identified by the survey.

Over the course of several months, these questions were discussed with panels of adults and parents in order to prioritize the research questions. This work yielded research questions in six topic areas that are the most important to the community of people living with Spina Bifida.

The topic areas, known as the Spina Bifida Community-Centered Research Agenda, are the result of two years of collaboration between SBA, researchers, parents of children with Spina Bifida, and adults who have Spina Bifida. The topics are:

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

Click here to view the complete Spina Bifida Community-Centered Research Agenda.

Why is the Community-Centered Spina Bifida Research Agenda important?
  • Specialists in Spina Bifida care agree that they don’t have a complete understanding of how to provide the best care for people with Spina Bifida
  • People who need Spina Bifida-informed care confirmed that there are gaps in provider’s understanding of how to care for them.
  • Meaningful research is needed to close those gaps in understanding, and to improve health care outcomes for people with Spina Bifida.
  • Most research proposals and grant applications require involvement from patients. The Spina Bifida Research Agenda provides the patient perspective because it is based directly on the topics that people with Spina Bifida have said matter the most to them and where they feel research is needed.

If you have questions, please write to contact Judy Thibadeau, National Director of Research & Services, at [email protected].