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As one of the nation’s leading treatment centers for patients who have spina bifida, and among the handful of centers in the U.S. that treat adults who have spina bifida, Gillette was invited by the Centers for Disease Control and Prevention (CDC) to participate in the National Spina Bifida Patient Registry (NSBPR). The Registry collects information from patients to better understand the associations between medical procedures and health outcomes.

Select Ongoing Spina Bifida Studies at Gillette Children's

National Spina Bifida Patient Registry

Gillette Children's is participating in the CDC Spina Bifida and Tethered Cord Registry. The CDC National Spina Bifida Patient Registry (NSBPR) was established in 2008 to create a systematic approach to improving the quality of care of individuals with Spina Bifida and/or tethered cord nationwide. 22 clinics around the US participate, including Gillette Children's.

Gillette Children's has enrolled 515 patients in the registry since 2016. In 2021 we:

  • Enrolled 31 people into our registry,
    including 25 children and 6 adults
  • Conducted 115 annual interview visits,
    including 69 children and 46 adults
  • Had 42 people complete their 5th and
    final interviews

For more information about the registry visit National Spina Bifida Patient Registry, participating center (Principal Investigator: Rhonda Cady)

Spina Bifida Clinic Map

Spina Bifida Research | Gillette Children's