Requirements for Researchers

The Spina Bifida Association is committed to supporting research that expands our understanding of Spina Bifida and, ultimately, improves the lives of everyone impacted by it. One way we do this is by making sure our community is aware of opportunities to take part in meaningful research.

When a research project aligns with our mission and meets our guidelines, SBA can help researchers get the word out about their study through a variety of channels that reach the Spina Bifida community, including:

  • SBA’s social media platforms
  • Relevant committees and volunteer groups
  • SBA’s listservs
  • Clinic staff and clinical partners
  • Other audiences and networks connected to the SB community

Our Commitment to Respecting Research Participants

SBA is equally committed to respecting our community and ensuring that research opportunities are shared responsibly. To protect potential participants and maintain high standards, we ask researchers to provide the required documents and information.

  • IRB approval.
  • Informed-consent materials.
  • Abstract with a detailed description of the study.
  • Actual copy of the survey.
  • Promotional materials to be used for recruitment.
  • Agreement to share study outcomes with SBA.
  • Explanation of study implications on the SB community and how it informs the Spina Bifida Community-Centered Research Agenda.
  • Explanation of how the SB community was included during the development stage of the research proposal. If this is not possible, provide an explanation.
  • Completed checklist for researchers.

Please allow SBA’s research coordination team two to three weeks for the review process.

We look forward to helping you connect with the Spina Bifida community in a way that is ethical, transparent, and supportive for all involved.