Research Agenda

We are currently working on the first-ever Spina Bifida Research Agenda. This initiative will help identify the most important and relevant needs of the Spina Bifida community that will create research opportunities to address these needs. 

What is a research agenda?

A research agenda is a guiding document that identifies the most important research topics for a community and introduces them to clinicians and researchers as research opportunities. This document will be shared with clinicians across the country (and around the world) and SBA will work with and recruit clinicians and researchers interested in these topics. From there, we and interested research partners will use this document to find funding to conduct the research that will inform these most important Spina Bifida research priorities.

Thanks to the input of our community, SBA has identified the six most relevant and important health-related topics for Spina Bifida. This community input was used by the Research Advisory Council to develop 10-12 research questions in each of the six topic areas which will shape the final Spina Bifida research agenda. 


What are the top health topics in the research agenda?

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

Are you interested in shaping the future of Spina Bifida research?

SBA is looking for volunteers to join discussion groups for each of these topics. If you are an adult with Spina Bifida, or you care for someone with Spina Bifida, who has been impacted by any of these topics, please consider joining a discussion group that aligns with your interests.


  1. Bowel Management – August 16, 2020. Complete.
  2. Urinary Continence – January 31, 2020. Complete.
  3. Transition – registration survey coming soon
  4. Mental Health – registration survey coming soon 
  5. Weight Management/Physical Activity. Complete.
  6. Self-Management – February 2021

Please note, these groups will have limited capacity and participants will be chosen so as to represent our community geographically, by race/ethnicity, gender, and age. If you are not selected for the group of your interest, there will be another community-wide opportunity to influence and vote on the most important research questions.

Questions? Please contact Judy Thibadeau, SBA Director of Research and Services.