Research Approaches to Improve the Care and Outcomes of | Apply Online

Opportunity Summary:

The CDC grant opportunity "Research Approaches to Improve the Care and Outcomes of" (Funding Opportunity Number RFA DD 14 002) is a discretionary grant program focused on improving clinical care, health outcomes, and practical educational or informational resources for people living with spina bifida (SB). The central aim is to strengthen how SB care is delivered across clinics by building systems that can monitor what care is being provided, compare outcomes across sites, and use real-world data to identify and spread best practices. In total, the opportunity is structured around three connected components that range from building care-monitoring infrastructure, to continuing long-term patient data collection, to testing a focused clinical protocol intended to protect kidney health in very young children.

Component A concentrates on creating the infrastructure for a Spina Bifida Clinical Care Monitoring and Tracking (CCMT) system. The intent is not simply to collect information, but to put a functioning framework in place that can routinely monitor, track, and evaluate patterns of care across SB clinics. The larger goal is to improve and standardize care through evidence-based effectiveness analysis, meaning clinics can compare what they do, see which approaches are linked with better outcomes, and align clinical practice with proven strategies. This CCMT system is also expected to strengthen coordination and communication between SB clinics and SB chapters, help inform research priorities for the National Spina Bifida Patient Registry (NSBPR), and encourage adoption of best practices identified through the NSBPR, the Urologic Protocol for Pediatric Patients/UPPF (as referenced in the announcement), and other credible sources.

Component B supports ongoing collection of longitudinal data for both children and adults with SB, emphasizing long-term tracking rather than one-time snapshots. These data are intended to drive quality improvement by allowing comparisons across clinics, particularly comparisons of interventions and resulting outcomes. The point is to use variation in practice as an opportunity to learn what works best in real clinical settings, then translate those findings into better care standards. Component B also explicitly supports hypothesis generation, using NSBPR data to propose research questions that can later be developed and tested, which helps turn routine clinical data into a pipeline for continuous improvement and targeted research.

Component C is more narrowly clinical and intervention-focused: it funds the implementation and evaluation of a best practice protocol for urinary system management in infants and young children with SB, with kidney function preservation highlighted as a key positive health outcome. The emphasis is on moving toward an evidence-based protocol, meaning the funded work should help determine whether a structured approach to early urologic management leads to better kidney outcomes and could be adopted more broadly. A major structural rule applies here: any applicant seeking Component C funds must also apply for Component B, and only organizations funded under Component B will be eligible to be considered for Component C funding. This requirement aligns with the logic of the program, since evaluating a clinical protocol depends on strong, consistent longitudinal data collection and outcome tracking.

From an administrative standpoint, this opportunity was posted February 25, 2014, with a letter of intent due February 7, 2014, and a full application due March 12, 2014 (by 11:59 PM U.S. Eastern Time). The program anticipated up to 30 awards, with an estimated total funding amount of $10.5 million and an award ceiling of $800,000. There was no cost sharing or matching requirement. The activity category is health, and the CFDA number listed is 93.315 (Rare Disorders Research, Surveillance, Health Promotion, and Education). The announcement was later archived April 11, 2014.

Eligibility was broad and included many organization types, such as public and private institutions of higher education (including minority-serving institutions like HBCUs, HSIs, TCCUs, and Alaska Native and Native Hawaiian-serving institutions), nonprofits, for-profit organizations (including small businesses), and multiple levels of government (state, county, city/township, special district, tribal governments, territories). It also allowed eligible federal agencies, faith-based and community-based organizations, regional organizations, and Federally Funded Research and Development Centers (FFRDCs). The FOA also described how a "bona fide agent" could apply on behalf of a state or local government, provided a legal binding agreement documenting that status is included in the application package.

Overall, the grant is designed to tighten the connection between clinical practice, continuous data-driven learning, and implementation of best practices in spina bifida care. It pushes beyond basic surveillance by emphasizing infrastructure that supports communication and coordinated improvement, robust longitudinal data collection through the NSBPR framework, and targeted evaluation of a high-impact clinical protocol area (early urinary management) where improved consistency and evidence could directly affect long-term health outcomes like kidney preservation. For technical assistance accessing the full announcement, the CDC Procurement and Grants Office Technical Information Management Section (TIMS) was listed as the contact point (phone 770-488-2700, email pgotim@cdc.gov).

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