Long-term health outcomes of people living with spina bifida

Description

The purpose of component A (8-11 awardees) of this NOFO is to collect high-quality longitudinal data on children and adults with spina bifida (SB) who receive care in specialized spina bifida clinics participating in the National Spina Bifida Patient Registry (NSBPR). The purpose of component B (6-8 awardees) is to implement and evaluate the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) iterative protocol which aims to improve the management of the urinary and kidney systems in infants and young children with myelomeningocele. Building on existing longitudinal data collection, recipients will continue to collect data on patients with SB to better understand health outcomes after interventions and treatments, analyze the data and share findings to identify opportunities for improvement of care. An additional objective for Component B is to finalize the UMPIRE protocol for children 0-10 years old with myelomeningocele. Sources of data are specialty clinics that care for pediatric and adult patients with SB

Official source

Beneficiarios elegibles

• Native American tribal governments (Federally recognized)
• For profit organizations other than small businesses
• Special district governments
• Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education
• State governments
• Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education
• Small businesses
• Independent school districts
• County governments
• Public and State controlled institutions of higher education
• City or township governments
• Private institutions of higher education