National Spina Bifida Patient Registry

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Investigator: Mitul R. Kapadia, MD, MPH
Sponsor: Oakland Children's Hospital Medical Center

Location(s): United States

Description

Registry Components

NSBPR objectives are to:

Collect continual comparative data on patient demographics, treatment, and outcomes for children, adolescents, and adults 21 years of age or older, who attend spina bifida clinics in the United States.

  • Develop and revise (as necessary) standards of care and treatment best practices for patients with spina bifida.
  • Share evidence-based information between physicians across the country, advancing best practices for the secondary conditions of spina bifida, such as paralysis, neurogenic bladder and bowel, and hydrocephalus.
  • Implement benchmarks to improve care in spina bifida clinics.
  • Identify centers that provide the most beneficial care to patients.
  • Evaluate the clinical cost-effectiveness of spina bifida treatment.