Mariam Kayle, assistant professor, met with congressional staff during the week of November 30 to December 4 to inform them about efforts of the North Carolina Sickle Cell Data Collection Program, according to Duke Health Government Relations' Federal Health Policy Updates e-newsletter. 

Currently, there is a lack of national surveillance data on the epidemiology, health care needs, and financial impact of sickle cell disease (SCD) in the United States. The NC Sickle Cell Data Collection Program aims to implement a high-quality state-wide, population-based SCD surveillance program in NC to accurately describe the epidemiology of SCD, identify population health care needs, and disseminate findings to inform health care practices, research, and health policy for SCD in the state.

During each meeting, Kayle provided an outline of the program, its aims, and the stakeholders involved and discussed the importance of a state-wide SCD surveillance program to improve health outcomes for individuals across NC.

The program is supported by an award for Kayle's subcontract on a NCDHHS proposal to the Centers for Disease Control and Prevention U58 program entitled: "North Carolina Sickle Cell Data Collection Program."