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

Key Facts

Status: Open

Posted date: December 12, 2025

Archive date: April 15, 2026

Opportunity ID: 361002

Opportunity number: CDC-RFA-DD-26-0222

Opportunity category: Discretionary

Agency name: Centers for Disease Control - NCBDDD

Agency code: HHS-CDC-NCBDDD

Award floor: $166,428

Award ceiling: $488,571

Cost sharing required: No

Funding Instrument Types
  • Cooperative Agreement
Category of Funding Activity
  • Health
Eligible Applicants
  • City or township governments
  • County governments
  • For-profit organizations other than small businesses
  • Independent school districts
  • Native American tribal governments (Federally recognized)
  • Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education
  • Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education
  • Private institutions of higher education
  • Public and State controlled institutions of higher education
  • Small businesses
  • Special district governments
  • State governments
Tools
Categories (use these for quoted searches)
  • agency_code:hhs_cdc_ncbddd
  • category_of_funding_activity:health
  • cost_sharing_or_matching_requirement:false
  • eligible_applicants:city_or_township_governments
  • eligible_applicants:county_governments
  • eligible_applicants:for_profit_organizations_other_than_small_businesses
  • eligible_applicants:independent_school_districts
  • eligible_applicants:native_american_tribal_governments_federally_recognized
  • eligible_applicants:nonprofits_having_a_501_c_3_status_with_the_irs_other_than_institutions_of_higher_education
  • eligible_applicants:nonprofits_that_do_not_have_a_501_c_3_status_with_the_irs_other_than_institutions_of_higher_education
  • eligible_applicants:private_institutions_of_higher_education
  • eligible_applicants:public_and_state_controlled_institutions_of_higher_education
  • eligible_applicants:small_businesses
  • eligible_applicants:special_district_governments
  • eligible_applicants:state_governments
  • funding_instrument_type:cooperative_agreement
  • opportunity_category:discretionary
  • status:open
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

Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry
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
Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry
Open
Centers for Disease Control - NCBDDD
Health
Cooperative Agreement
State governments
County governments
City or township governments
Special district governments
Independent school districts
Public and State controlled institutions of higher education
Native American tribal governments (Federally recognized)
Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education
Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education
Private institutions of higher education
For-profit organizations other than small businesses
Small businesses
2025-12-12