Spina Bifida Research Workshop

Saturday, November 6, 2021
12:00pm - 4:00 p.m. ET
Location: Virtual Event


On November 6, 2021, from 12-4 pm ET, the Spina Bifida Association (SBA), in collaboration with the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC), will convene a workshop on the first Community-Centered Spina Bifida Research Agenda.

 For the past two years, SBA has worked to develop a research agenda that merges research gaps identified during the development of the Guidelines for the Care of People with Spina Bifida (Guidelines) with the issues that have the greatest impact on people living with Spina Bifida. More than 250 research gaps were identified in the development of the Guidelines. They were used to develop a survey to determine which research issues matter most to parents of children and adults with Spina Bifida.

Upon conclusion of the survey, SBA convened a Research Advisory Council that includes parents of children, adults, clinicians, and researchers to develop research questions in each of the six most impactful topics identified by the community-Bowel Continence, Urinary Continence, Transition, Mental Health, Weight Management/Physical Activity, and Self-Management.

These questions were discussed with panels of adults and parents and prioritized. This work has yielded 31 research questions that are the most important to the community of people living with SB, the Spina Bifida Research Agenda.


Attendees of the workshop will be provided with the Spina Bifida Research Agenda. They will explore opportunities to answer research questions using the National Spina Bifida Patient Registry at the CDC. During the workshop, attendees will choose one of the six topics and participate in a facilitated working session on that topic, interacting with other clinicians and researchers. Attendees will have the opportunity to develop new collaborations around specific research questions, brainstorm new projects, and identify potential funding sources.

This workshop is intended for both experienced researchers and those new to research and those interested in quality improvement projects. We also welcome representatives from funding agencies and professional organizations.

If you have questions, please contact SBA's Director of Research, Judy Thibadeau at [email protected].

To register, click here. Admission is complimentary.

Details At a Glance

  • Date: November 6, 2021
  • Time: 12pm - 4pm, ET
  • Where: Via Zoom
  • Fee: No charge
  • To register: Click Here
  • Questions: Contact Judy Thibadeau at [email protected]