Long-Term Health Outcomes of People Living With Spina Bifida (NOFO)

NOFO Purpose

The Centers for Disease Control and Prevention (CDC)'s National Center on Birth Defects and Developmental Disabilities (NCBDDD) has released a funding opportunity: CDC-RFA-DD-26-0222 Long-term health outcomes of people living with spina bifida

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 (6-9 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.

More information

Long-term health outcomes of people living with spina bifida

CDC-RFA-DD-26-0222

Funding opportunity to research health outcomes for people living with spina bifida.

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For more information on this funding opportunity, visit https://simpler.grants.gov and search for: CDC-RFA-DD-26-0222

Application DUE DATE: October 26, 2026, at 11:59 p.m. ET

Informational slides

CDC-RFA-DD-26-0222 Informational Webinar Slides

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Information session audio recordings

Listen to audio recordings of the informational sessions presented on May 27, 2026. Transcripts are available for each recording.

• Informational session recording
  • Transcript

Frequently asked questions

Question 1: For Biosketches for Key Personnel, is either version of the NIH Biosketch acceptable (the link in the NOFO or the SciENcv)?

Answer 1: Either version of the NIH Biosketch is acceptable. A two-page resume is also acceptable. For Component B, the pediatric urologist should submit a CV (See Organizational Capacity section, page 45).

Question 2: Are job descriptions required for ONLY key personnel not yet hired, or for all personnel including staff/non-key?

Answer 2: See Attachments section, page 47 of the NOFO, "attach resumes for positions that are filled. If a position isn't filled, attach the job description with qualifications and plans to hire." Key personnel include all staff required to fulfill the requirements and activities of the NOFO (see Organizational Capacity section, page 28).

Question 3: For component B, it sounds like data collection is only for currently enrolled patients, and that enrollment of new patients is not desired.

Answer 3: Component B recipients will collect longitudinal data for participants currently enrolled in UMPIRE and conduct activities to prevent loss to follow-up (see Program Logic Model section, pages 17 & 20).

Question 4: For NSBPR Background and Approach, we will be graded for proportions of individuals with recorded data between 2020 and 2024 with more than five total visits. Since patients should only have annual visits recorded, how can patients have more than five total visits in a five-year period?

Answer 4: This metric quantifies longitudinal data collection for recently active participants. The proportion's denominator of recent participants is defined as those with at least one registry visit in the recent period (January 2020–August 2024). Within this subset, the numerator is the proportion with more than five total visits ever recorded in the NSBPR (see Responsiveness criteria section, page 7).

Question 5: What is the definition of "visit" in the following sentence? "The proportion of individuals seen between January 2020 and August 2024 who have more than five visits." Does "visit" mean a visit to a specific SB clinic or a visit to a SB specialty provider like neurosurgery or urology outside of SB clinic?

Answer 5: This referenced sentence is located on page 8 of the NOFO, under responsiveness criteria for Component A. In this context, a "visit" refers specifically to a visit at a participating NSBPR spina bifida clinic.

Question 6: Are multiple sites allowed to collaborate on a single application?

Answer 6: Each organization with a unique UEI number may submit one application for each component for a maximum of two applications (see Application Limits section, page 9). Only one organization is permitted to receive funding directly from the federal government.

Question 7: Would collaborating with another site potentially increase the strength of the application if doing so increases the number of potential enrollees?

Answer 7: Applicants should review the NOFO, including the Project Narrative section starting on page 41, and propose the approach which best meets the requirements of the NOFO

Question 8: Can there be different Principal Investigators (PIs) for Comp A & B if both PIs are from the same institution?

Answer 8: Yes, an organization can apply for both Component A and Component B, and may identify a different Principal Investigator (PI) for each component. The NOFO requires a separate application for each component; each application is evaluated separately (see Application Limits section, page 9 and Applications Contents and Format section, page 40). Your application must also include a staffing plan that clearly defines staff roles to achieve the project outcomes (see Staff Capacity section, page 28).

Question 9: Are Co-PI's allowed?

Answer 9: There will only be one principal investigator listed for each component on the Notice of Award and in official CDC systems. Applicants should propose costs that are reasonable and consistent with your project's purpose and activities (see Budget Narrative section, page 46).

Question 10: In the RFA it looks like only clinics currently funded are eligible. We were a funded site for 8 years but lost funding last cycle. Would we be eligible for the grant?

Answer 10: This NOFO is open competition to eligible organizations (see Eligibility section, page 7). The purpose is to collect longitudinal data from SB specialty clinics to describe key outcomes and identify healthcare and clinical practices associated with the best outcomes for individuals living with SB. The goal is to improve the health and quality of life for individuals of all ages living with SB (see Purpose section, page 15). Component A intends to fund organizations with access to patients with spina bifida and capacity to collect the data elements in the NSBPR. Component B intends to fund organizations with participants currently enrolled in UMPIRE, access to patients with spina bifida, capacity to collect UMPIRE data elements, and a pediatric urologist who is part of the study team (see page 8). Please see the Eligibility and Responsiveness Criteria (pages 7-8) of the NOFO for more information.

Question 11: Are applicants required to be currently enrolling patients in the NSBPR (or at least between 2020 and 2024)? It appears this is either required or heavily encouraged.

Answer 11: Any applicant meeting the requirements of the Eligibility section of the NOFO may apply (see page 7). Applicants should also review the Responsiveness section (see page 8) to ensure they address those requirements as well.

Question 12: Can an applicant have a subaward with another site?

Answer 12: Yes, provided it complies with federal regulations and the terms of the prime award.

Question 13: Are the indirect costs to be included in the budget?

Answer 13: Yes, indirect costs should be included in the budget. See the Budget Narrative section, starting on page 46 of the NOFO.

Question 14: For Component A, our institution has a multi-disciplinary SB clinic, but patients also see specialists outside of this clinic. Are patients eligible for enrollment if they are seen outside the multi-disciplinary clinic, or if enrollment is only through that clinic?

Answer 14: Applications should demonstrate that the Strategies and Activities of the NOFO can be met (see page 18), including to collect annual data according to the surveillance protocol. This should be supported through the information provided in Organizational Capacity including staff and collaborations (see page 27).

Question 15: Does the PI need to have a CV under Responsiveness Criteria and a Biosketch under Staff Capacity?

Answer 15: The only CV requested is for the pediatric urologist as part of Component B. For an application for Component B, this document is sufficient for both the Responsiveness Criteria (starting on page 7) and the Staff Capacity requirements (page 28).