SBA, through the Spina Bifida Collaborative Care Network, leads research to enhance the quality of life for people living with Spina Bifida.
How we’ll accomplish this:
- Create Research Agenda: Define, share, and seek funding to support a prioritized national research agenda to address the gaps identified in the Guidelines for the Care of People with Spina Bifida (Guidelines).
- National Spina Bifida Patient Registry: Support and continue to be a key influencer of the agenda for the National Spina Bifida Patient Registry (NSBPR) at the Centers for Disease Control and Prevention (CDC).
- Translational Research: Develop and implement a continual process to review and update the Guidelines.
- Research & Study Requests: Review, approve, and share information about Internal Review Board approved research studies.
- Conduct Research: Conduct discrete research projects/needs assessments to better understand the Spina Bifida community.
- Summarize Research: Begin a regular process of summarizing and sharing currently published information about Spina Bifida.