The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q) - Washington University in St. Louis proposes to serve as the Regional Coordinating Hub (RCH) for the Heartland region under the Sickle Cell Disease Regional Care Excellence (SoRCE) Program, building on more than 15 years of continuous sickle cell disease (SCD) program leadership. The Heartland RCH SCD Network spans seven states, Missouri, Louisiana, Texas, Arkansas, and Iowa as Clinical-Community Spokes (CCS), and Oklahoma and Nebraska as Network Partners, together home to more than 52 million residents and an estimated 20,293 individuals with SCD. Currently, only about 3,386 of these individuals, roughly 17 percent, are connected to specialty SCD care through our network, with the gap most pronounced among adults and rural residents who face a shortage of trained providers, low uptake of disease-modifying therapies and preventive screening, and limited access to holistic, coordinated, and language-accessible care. The Heartland RCH will address these needs by formalizing five CCS, each pairing an academic medical center with a community-based organization, while sustaining engagement with its two Network Partner states. The network will expand access through targeted provider recruitment, an advanced practice provider training pathway (SAPPORT), and a dedicated strategy to close the Louisiana adult care gap through Project ECHO telementoring and provider training. Continuous quality improvement activities, grounded in a partnership with an established, multi-institution quality improvement Project ECHO, will target measurable gains in hydroxyurea initiation, transcranial Doppler screening, and emergency department utilization. People with SCD and their families will be engaged as compensated partners through a Community Advisory Board with decision-making authority over engagement funding. The RCH will build on its existing GRNDaD data infrastructure, already active across all Clinical-Community Spoke and Network Partner sites, to track population served, disease-modifying therapy utilization, emergency department use, and high school graduation among youth served, and will collaborate closely with the HRSA-funded SCD National Coordinating Center on training, technical assistance, and program evaluation. By August 31, 2030, the Heartland RCH aims to serve at least 30 percent of people with SCD in the region, increase disease-modifying therapy utilization by 5 percent over baseline, and establish reliable annual reporting on emergency department use and educational outcomes, building durable, replicable infrastructure that will continue to serve the region's SCD population beyond the period of federal funding.
