Congratulations to Mariam Kayle, assistant professor, and her entire team received an award for their Center for Disease Control U58 proposal entitled "Capacity Building for Sickle Cell Disease Surveillance in North Carolina (Component A)." This award is for a one-year period from September 30, 2019 to September 29, 2020.

Sickle cell disease (SCD) is one of the most common monogenic disorders globally. Due to the lack of national surveillance data, the precise incidence and prevalence of SCD in the United States (U.S.) are unknown. Current estimates suggest that 100,000 people, predominantly Black or African American, live with SCD in the U.S. These estimates are based on newborn screening and life expectancy projections and are not based on actual national counts. There is an urgent need for a national registry and state-based surveillance programs to have more accurate national and regional incidence and prevalence counts of SCD and to have a better understanding of the geographic distribution and health care needs of the affected population.

The purpose of this component A application is to build capacity for the implementation of a state-wide, population-based SCD surveillance program in NC by expanding partnerships with key stakeholder and leveraging multiple data sources across the state including state-level databases (Medicaid, newborn screening, death certificates, and hospital and emergency department discharge data); community-based organization data; private insurance claims; as well as electronic health record data across all the six sickle cell centers. We will also explore the feasibility of partnering with clinical laboratories to leverage their data sources and identify people with SCD who are not identifiable through other data sources. By the end of the one-year performance period, this application will achieve the following outcomes:

1. Expansion of existing partnerships among the key stakeholders towards a SCD surveillance system in NC

2. Increased understanding among partners of the feasibility and utility of linking multiple data sources to develop a SCD surveillance system in NC

3. Increased standardization of the methods of SCD surveillance

4. Development of a framework for SCD surveillance in NC

North Carolina is well poised to initiate a state-wide surveillance program because of: (1) the existing SCD infrastructure including a state-wide care management program, existing state-level databases, and six comprehensive sickle cell centers with electronic health records on more than 4800 individuals with SCD across the life span; and (2) existing partnerships among the key stakeholders. We have established a strong team directly responsive to the CDC’s NOFO (DD19-1906), capitalizing on existing collaborations among the key stakeholder and the expertise within the NC Department of Health and Human Service, Duke University, and our partners on this application.

A state-wide SCD surveillance program in NC would allow for the collection and analysis of health data to identify critical gaps in the diagnosis, treatment, and access to

care for people with SCD. Establishing a state-wide SCD surveillance program in NC will help identify the population health care needs and inform health care practices and

health policy for people with SCD in the state. It will also allow the opportunity to connect with other states who are embarking on SCD surveillance through this application (component A recipients) and those with established surveillance systems (component B recipients) to collaborate on data sharing and advance our understanding of SCD-related health care, health outcomes, and health disparities across states and nationally.