Long-term health outcomes of people living with spina bifida

The Centers for Disease Control and Prevention, through the Division of Birth Defects and Infant Disorders within the National Center on Birth Defects and Developmental Disabilities, is offering the Long-term health outcomes of people living with spina bifida cooperative agreement under opportunity CDC-RFA-DD-26-0222 and Assistance Listing 93.073. CDC estimates that approximately 160,000 people in the United States live with spina bifida, a condition requiring complex multidisciplinary care. CDC established the National Spina Bifida Patient Registry in 2008 and later established the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida. This funding opportunity builds on those initiatives by continuing longitudinal follow-up and using accumulated clinical data to improve understanding of care and long-term outcomes for people living with spina bifida. The opportunity contains two separate but complementary components. Component A, the National Spina Bifida Patient Registry, will support collection of high-quality longitudinal data on children and adults with spina bifida receiving care in specialized clinics. Component B will support implementation, evaluation, and refinement of the UMPIRE protocol for infants and young children with myelomeningocele, with the goal of preserving kidney function through improved urinary system management. Recipients will collect and securely submit standardized data, conduct data quality activities, participate in training and collaborative meetings, analyze pooled data with CDC and other recipients, and share findings through presentations and publications. The overall goal is to improve health and quality of life for children and adults living with spina bifida. The period of performance is three years, divided into 12-month budget periods. Component A expects 8 to 11 awards, with approximately $100,000 to $200,000 per recipient per 12-month budget period and an estimated $300,000 to $600,000 per applicant over the full period of performance. Component B expects 6 to 9 awards, with approximately $50,000 to $100,000 per recipient per budget period and an estimated $150,000 to $300,000 over three years. The NOFO reports expected three-year component program funding of $2.4 million to $6.6 million for Component A and $900,000 to $2.7 million for Component B. Applicants should dedicate approximately 5 to 10 percent of project funding to monitoring, reporting, and evaluation. Funds may be used only for reasonable program purposes consistent with the award and applicable law. Clinical care is generally unallowable except as permitted by law, and pre-award costs require authorization. Lobbying and certain other restricted activities may not be supported. There is no required cost sharing or matching contribution. Eligible applicants include state, county, city or township, and special district governments; independent school districts; public and state-controlled institutions of higher education; federally recognized Native American tribal governments; Native American tribal organizations; public housing authorities and Indian housing authorities; nonprofits with or without 501(c)(3) status other than institutions of higher education; private institutions of higher education; for-profit organizations other than small businesses; and small businesses. Bona fide agents may apply on behalf of eligible state, territorial, local, and tribal government organizations when documentation of the arrangement is provided. Applicants may apply to Component A, Component B, or both, but must submit a separate application for each component. Each organization, normally identified by its UEI, may submit no more than one application for each component. Applications must be submitted through Grants.gov by 11:59 p.m. Eastern Time on Monday, October 26, 2026. Applicants must maintain active SAM.gov and Grants.gov registrations. An optional letter of intent is due September 26, 2026, and an optional informational call is scheduled for September 17, 2026. Required application materials include a one-page project summary, a project narrative limited to 20 pages, a budget narrative, responsiveness criteria documentation, resumes and job descriptions, an organizational chart, at least one required letter of commitment, a data management plan, and applicable standard federal forms. Applicants must also provide a detailed first-year work plan and a high-level plan for subsequent years, along with an evaluation and performance measurement plan. Component-specific responsiveness documentation is required, including relevant patient enrollment and visit information. Component B additionally requires the curriculum vitae of a pediatric urologist. Applications first undergo a responsiveness review, and applications that fail the eligibility, deadline, or responsiveness requirements do not advance to merit review. Applications passing initial review are evaluated by a panel for a total of 100 points. Background and approach account for 40 points, the evaluation and performance measurement plan accounts for 25 points, and organizational capacity accounts for 35 points. Reviewers assess experience collecting longitudinal spina bifida data, alignment with CDC strategies and outcomes, data management and secure transfer capabilities, the work plan, evaluation capacity, staffing, organizational structure, and collaborations. CDC also conducts a pre-award risk review. Funding decisions generally follow panel rankings, subject to available appropriations, applicable laws, agency priorities, and CDC leadership review. CDC may fund an application in whole or in part or at an amount lower than requested. The expected award date is August 1, 2027, and the expected project start date is September 1, 2027. Awardees will receive an official Notice of Award and will be subject to financial, performance, data management, evaluation, and other post-award reporting requirements. The Recipient Evaluation and Performance Measurement Plan is due six months into the award, with annual performance and financial reporting thereafter. Program questions may be directed to Matthew Williams at vgx3@cdc.gov or 770-448-2679. Grants management questions may be directed to Robyn Byrant at ppa4@cdc.gov or 770-488-2881. Grants.gov also provides technical support at support@grants.gov or 1-800-518-4726. No recurrence language establishes this opportunity as an annual or otherwise recurring competition.

Use the exact required project narrative headings and order. Address every scored criterion because the narrative is worth 100 points: Background and approach 40 points, Evaluation and performance measurement plan 25 points, and Organizational capacity 35 points. For Component A, document the number of individuals with clinical spina bifida surveillance data and the proportion with more than five visits because these carry substantial points. For Component B, document at least 20 individuals with myelomeningocele whose clinical data were recorded between 2020 and 2024. Demonstrate secure transfer of limited-identifier data, align the work plan to CDC strategies and measures, include the required staffing roles, and submit all responsiveness materials. Keep the project narrative within 20 pages because pages over the limit will not be reviewed.