Where can I learn which states are participating in the SCDC program?

Visit the SCDC Program Data webpage for a current list of funded state-based programs.

Are SCDC data publicly available? Can I access/use the data?

SCDC data are collected and stored securely at the state level. CDC receives only de-identified aggregate (combined/summary) SCDC data, which are used to create annual tables and figures that are publicly available. Visit the SCDC Program Data webpage to view currently available data. Additional state-based SCDC data will be uploaded when available.

How does CDC Foundation support SCDC?

CDC Foundation is an independent foundation authorized by Congress to mobilize partnerships to support CDC’s critical heath protection mission.

In 2015, the SCDC program was launched in California with technical leadership from CDC’s Division of Blood Disorders and funding support from CDC Foundation Georgia began work on SCDC the following year. The SCDC programs in both states were primarily funded by CDC Foundation charitable contributions. Since then, new federal funds have been appropriated to support SCDC. Supplemental funding from CDC Foundation continues to support the SCDC program’s goals to monitor the health of people with SCD in the United States, address research questions using multistate data, and produce products that help the SCD community turn data into action to improve care.

How have states been selected to participate in SCDC?

SCDC Notice of Funding Opportunity (NOFO) applications undergo a competitive process and objective review. Click here for additional resources and information about CDC’s grant application and review process.

In March 2020, CDC published a NOFO for CDC-RFA-DD20-2003 “Sickle Cell Data Collection Program.” Through this NOFO, CDC funded 11 recipients for a period of 3 years to develop and carry out a statewide SCD surveillance (health monitoring) system. It is estimated that these 11 states represent about 36% of the U.S. sickle cell population.

How can my state participate in SCDC?

As funding becomes available, CDC aims to launch a new 5-year cooperative agreement beginning in 2023 to continue the SCDC program. All CDC grant and cooperative agreement opportunities are posted on The NOFO will include a description of the project and the entities that are eligible to apply.

What resources are available to better understand how CDC conducts surveillance for sickle cell disease?

CDC has made available to the public resources from the SCDC capacity building project. In 2019, CDC funded nine 9 entities through a competitive application process to prepare state-based programs to conduct SCD surveillance activities. Among the resources are a guiding framework, presentation slides, and surveillance resources on data linkage, data policy, and data use agreements.

How can I get updates on what's happening with SCDC?

The Bloodline is a quarterly newsletter that provides updates about the SCDC program. Click here to access and download previous issues of The Bloodline. You can also subscribe to the newsletter for the latest updates on the SCDC program’s health communication activities, data, presentations, and more.

How can I learn more about previous surveillance programs for SCD?

CDC and participating states began SCD surveillance in 2010 and developed many educational materials based on this information. SCD surveillance involves collecting information on diagnoses, treatment, and healthcare use for people with SCD in the United States. Prior to SCDC, these efforts were coordinated by CDC as part of the two projects outlined in CDC’s SCD Surveillance History.

For additional information about the SCDC program please submit an inquiry through CDC-INFO by completing the contact form or calling 1-800-232-4636.