Notice of Funding Opportunity (NOFO): CDC-RFA-DD-23-0002

Sickle Cell Data Collection (SCDC) Program

SCDC Sickle Cell Data Collection


Notice of Funding Opportunity (NOFO): CDC-RFA-DD-23-0002 was published on on February 9, 2023.

The intent of the Sickle Cell Data Collection (SCDC) program is to provide comprehensive population-based data to inform decisions and policies within funded state programs. The ultimate goal of the SCDC program is to improve the health and well-being of the sickle cell disease (SCD) community, a community that continues to be impacted by racism, bias, and prejudice. This NOFO allows recipients to gather unique data and conduct in-depth analyses to inform their SCD efforts and to compare and contrast SCD-related health care and health outcomes across states and across population groups.

This NOFO has two components:

  • Component A recipients are expected to use their existing SCD surveillance knowledge and infrastructure to complete activities at a rapid pace throughout the project period and to enhance their current methods of data acquisition and production of project-related materials.
  • Component B recipients are expected to use their existing experience in conducting chronic disease or rare disorders surveillance to build an SCDC team and infrastructure.

Each Component B recipient will be matched with one Component A recipient for technical assistance in navigating and understanding the development of an SCDC program for their state.

The NOFO supports the following strategies under each component:

  • Build and enhance SCDC program infrastructure
  • Build and strengthen capacity for SCDC data collection and analysis
  • Inform policies to support the SCD community
  • Inform stakeholders about the epidemiology of SCD

By the end of the 5-year period of performance in 2028, the following outcomes will be achieved:

  • Increased standardization and modernization of methods for SCD surveillance
  • Increased number of public health workforce professionals who understand SCD surveillance
  • Increased understanding of the incidence, prevalence, demographics, and healthcare utilization patterns of individuals with SCD
  • Increased ability to describe the geographic distribution, social determinants of health, and health disparities related to SCD
  • Increased availability and accessibility of SCD surveillance data to support policies that improve the lives of people with SCD
  • Increased availability and accessibility of educational materials to facilitate shared decision-making about SCD-related health care
  • Increased understanding of the epidemiology of SCD among individuals with SCD, family members and caregivers, healthcare providers, and policy makers
  • Increased utilization of SCD surveillance data to guide prevention and care efforts, monitor SCD health outcomes, develop policy, allocate resources, and plan and implement services, especially those concerning health care, housing, transportation, education, and employment for people with SCD

These outcomes will help SCDC reach the long-term outcomes of improved access to high-quality health care, housing, transportation, education, and employment for individuals of all ages with SCD; reduced occurrence of health- or healthcare-related complications, disparities, racism, and bias for individuals with SCD; improved quality of life for individuals with SCD; and increased length of life for individuals with SCD.


February 9, 2023 – Publication of SCDC NOFO

March 8, 2023 – Informational webinar for potential applicants – Informational Webinar Slides [695 KB, 19 Pages, 508]

April 6, 2023 – Letter of intent (LOI) deadline

May 11, 2023 – Application deadline

September 30, 2023 – Period of Performance start date

Frequently Asked Questions (FAQ) and Informational Webinar Questions and Answers (coming soon)

If you have questions about the SCDC NOFO, please send them to