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Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry

Centers for Disease Control and Prevention

Note: This is a Forecasted Opportunity.

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.

Estimated Post Date:

Feb 03, 2025

Estimated Application Due Date:

Mar 07, 2025

Specialties

Medical

Medical - Translational

Medical - Clinical Science

Eligibility Requirements

Sponsor Details

Sponsor Institute/Organizations: Centers for Disease Control and Prevention

Address: Centers for Disease Control and Prevention Office of Science Quality 1600 Clifton Road, NE Mail Stop D-72 Atlanta, Georgia 30333

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