Long-term health outcomes of people living with spina bifida
This cooperative agreement funds specialized spina bifida clinics to collect longitudinal registry data and, for a separate component, implement and evaluate a urologic management protocol for young children with myelomeningocele.
⚑ Component A and Component B are separate award tracks with different awardee counts. · Uses an existing national patient registry and specialty clinic data. · Eligibility not stated in the notice; no explicit applicant-class restriction provided.
This is biomedical/clinical registry and protocol-evaluation work on spina bifida care in specialty clinics, which is far outside IPPRA’s social-behavioral risk, policy, energy, weather, and education lines. The team might understand evaluation methods, but this is not a plausible PI-level fit for any named member.
JUDGED AGAINST THE ROSTER'S PUBLICATION DOSSIER · GPT-5.4-MINI · 2026-08-27
Unit fits — one characterization, each unit's own rules
| IPPRA | 58 good | peripheral portfolio topic: public_health; social/behavioral work is minor; funds evaluation research; biomedical core — IPPRA health lane is communication/crisis/policy (capped); clinical-trial/biomedical core — IPPRA angle is policy/community (capped) |
| Physical Sciences & Engineering (demo) | 40 partial | technical depth: substantial; funds evaluation research (capped) |
| Tom Love Innovation Hub | 15 none | deep-tech content; no commercialization signal |
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
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View on Grants.gov → CONTACT: Centers for Disease Control - NCBDDD <eut6@cdc.gov>
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