National Spina Bifida Patient Registry
Location(s): United States
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.