Friday, April 4, 2025
4/4/2025
Tennessee Public Health Surveillance Program for Sickle Cell Disease - Annually, more than 300,000 infants are born with SCD, and this number is expected to rise. Despite the presence of universal newborn screening in most US states for at least 3 decades and recent efforts to create targeted surveillance programs, the basic epidemiology of SCD in the US is not yet well classified. In addition, healthcare resource utilization for persons with SCD is not well classified, limiting our ability to fully understand the population-level impact on health. SCD is a disease of high acuity and high utilization in an underserved population where access to care is constrained. A robust disease surveillance program is essential for a public health approach to improving outcomes for this vulnerable group by identifying and monitoring geographical discrepancies and incongruities in care provision, ultimately providing opportunities for important disease-modifying therapies. Since 2019, we have been working with SCDC to address this public health crisis in Tennessee. We now propose to continue and expand this project over the next five years by expanding our data sources, partnering with new stakeholders, and putting data into action. Our team’s purpose is to build a resource that will move beyond descriptive epidemiology to inform critical projects that directly impact patient health. TN has a significant population of people with SCD who have socioeconomic challenges and critical healthcare needs, with significant gaps in care. An SCD surveillance program functioning at full capacity is critical to inform development of new programs and policy changes to meet the needs of this vulnerable population. Through this state-wide program, we will be able to identify critical gaps, devise potential solutions, and assess the impact of these solutions. The Short-Term outcomes for this project include: Increased standardization and modernization of methods for SCD surveillance; Increased number of public health work force professionals who understand SCD surveillance; Increased understanding of the incidence, prevalence, demographics, and healthcare utilization patterns of individuals of SCD; Increased ability to describe the geographic distribution, social determinants of health, and health disparities related to SCD; Increased availability and accessibility of SCD surveillance data to support policies that improve the lives of people with SCD; Increased availability and accessibility of educational materials to facilitate shared decision making about SCD-related healthcare. Mid-Term outcomes for this project include: 1)increased understanding of the epidemiology of SCD among individuals with SCD, family members and caregivers, health care providers, and policy makers; and 2) increased use of SCD surveillance data to guide prevention and care efforts, monitor SCD health outcomes, develop policy, allocate resources, and plan and implement services, especially those concerning healthcare, housing, transportation, education, and employment for people with SCD. Long-Term outcomes for this project include: 1) improved access to high-quality health care, housing, transportation, education, and employment for individuals of all ages with SCD; 2) reduced occurrence of health or health care-related complications, disparities, racism, and bias for individuals with SCD; 3) improved quality of life for individuals with SCD; and 4) increased length of life for individuals with SCD. The Tennessee SCDC consortium includes public health researchers, Tennessee Department of Health directors, epidemiologists, computational scientists, health policy experts, health communication experts, adult and pediatric hematologists, infectious and chronic disease surveillance experts, statisticians, community leaders, patients, and caregivers. We have regulatory approval and broad institutional support to continue this important work. Our ultimate goal is to use data to help improve the lives of individuals living with sickle cell disease.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).