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

While data are not publicly available for individual SCDC participants, aggregate SCDC data reports (data tables and figures) are published annually; these reports are available for the California and Georgia SCDC programs.

SCDC data are collected and stored securely at the state level. CDC collects only de-identified aggregate (combined/summary) data for annual reporting. Please contact the individual state entities if you have additional questions about these data.

How can I learn more about surveillance (health monitoring) data for sickle cell disease?

CDC and participating states began SCD surveillance in 2010. SCD surveillance involves collecting information on diagnoses, treatment, and healthcare use for people with SCD in the United States. CDC and participating states developed many educational materials based on this information.

These efforts were coordinated by CDC as part of the three projects outlined in CDC’s SCD Surveillance History.

How does CDC Foundation support SCDC?

In 2015, the CDC Foundationexternal icon, with technical leadership from CDC’s Division of Blood Disorders, launched the SCDC program in the state of California. The state of Georgia began work on SCDC the following year.  The project aims to inform the development of a model for uniform, comprehensive care throughout the lifespan for people with SCD. Comprehensive care is an approach that relies on many health professionals working to care for all the patient’s needs, not just the medical and physical ones. The SCDC programs in both states are primarily funded by CDC Foundation charitable contributions. SCDC uses and builds upon the framework created by previous CDC projects on SCD.

How can my state participate in SCDC?

In March 2020, CDC published a Notice of Funding Opportunity (NOFO) for CDC-RFA-DD20-2003 “Sickle Cell Data Collection Program.”external icon  Through this NOFO, CDC plans to fund up to five recipients for a period of 3 years to develop and carry out a statewide SCD surveillance system. The application period closed May 11, 2020. CDC aims to expand SCDC to more states as funding becomes available.

CDC’s SCDC Capacity Building project funded seven entities from September 2019 through September 2020 to prepare state-based programs to conduct SCD surveillance activities. Resources from the capacity building project are available to the public.

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

The Bloodline is a quarterly newsletter that provides updates about the SCDC program. Access and download previous publications 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.