Sickle Cell Data Collection Program Report: Data to Action – Future Steps

Continue SCDC activities

The SCDC program’s first priority is to continue work in the current SCDC states. These states have the necessary infrastructure (resources) and institutional knowledge in place to participate in the program. One aspect of this infrastructure is the data sharing agreements that can take years to establish. If the work in current SCDC states is interrupted because of lack of funding or other reasons, these states would be required to restart the data sharing agreement process. Therefore, it is critical to maintain the work begun in current SCDC states and to continue to build a surveillance model that can be applied to additional states.

Expand the number of states participating in SCDC

It is vital that additional states engage in statewide, comprehensive surveillance of those living with SCD, as every state has a unique demographic makeup, distinct healthcare policies, medical and research centers, and access to care. This includes building the framework to gather unique data and conduct in-depth analyses to better understand the needs and improve the health of the SCD population. As additional funding becomes available, the SCDC program seeks to support and onboard additional states.

Increase SCD knowledge

The SCDC program will continue to expand knowledge across the program’s 5 priority areas by developing targeted, evidence-based educational materials and sharing them with the wide range of SCD stakeholders. SCDC communications activities will continue to be an essential priority, as the purpose of SCD surveillance is to share insights that will ultimately drive improvements in health care and treatment for people living with SCD.