About Our Research

The National Spina Bifida Patient Registry (NSBPR)

In 2008, the Spina Bifida Association advocated establishing the Registry at the National Center for Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC) with the goal of learning what care, at what age result in better outcomes.


  • Identifies best practices in Spina Bifida care
  • Compares care provided in clinics, population groups, and geographic areas
  • Guides and prioritizes future Spina Bifida research

Who is in the Registry?

  • About 10,000 people from
  • 20 clinics across the country

Findings from the Registry:
The National Spina Bifida Patient Registry collects information from patients to understand the associations between medical procedures and health outcomes. This data was collected from 2009 to 2016 from children and adults who received care at one of the Spina Bifida clinics participating in the Registry.

CDC manages the Registry and partners with Spina Bifida patient organizations to share research findings with families, doctors, nurses, and other healthcare professionals. CDC is the only organization in the United States conducting this extensive multi-site clinical research to help people living with Spina Bifida.

View papers from the Registry here.