The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q) - SiNERGe (Sickle cell improvement across the Mid-AtlaNtic ReGion through Education) will serve as a multi-site collaborative dedicated to improving access to high quality, coordinated and comprehensive care for individuals with sickle cell disease (SCD) throughout the mid-Atlantic region, home to an estimated 18,804 individuals with SCD, representing approximately 20% of the U.S. SCD population. This collaborative includes Delaware, the District of Columbia, Maryland, New Jersey, Pennsylvania, Virginia, West Virginia, and Puerto Rico. Thomas Jefferson University located in Philadelphia will serve as the Regional Coordinating Hub for this project. People living with SCD often face barriers to receiving high-quality care. Access to specialized SCD services varies across the region, and many people experience challenges related to transportation, care coordination, and other social needs. In addition, some people with SCD are not connected to comprehensive care programs or do not receive recommended treatments. These gaps contribute to preventable complications, increased use of emergency services, and poorer health outcomes. To address these needs, SiNERGe will establish and support Clinical-Community Spokes (CCSs) that bring together comprehensive SCD clinical programs and trusted community-based organizations (CBOs). Initial CCSs will be located in Delaware, Maryland, New Jersey, and Virginia, with additional expansion planned during the project period. These partnerships will help identify people living with SCD who are not connected to comprehensive care, link them to needed services, provide education and support, and help address barriers such as transportation, care coordination, and access to comprehensive SCD care. The project will improve access to high-quality SCD care through provider education, workforce development, tele-mentoring, and quality improvement (QI) activities. Clinician-focused educational programs will include the weekly SCD Project ECHO, Pregnancy in SCD ECHO, Quality Improvement ECHO, SCD speaker series and the Sickle Cell Disease Advanced Practice Provider Opportunity, Resources, and Training (SAPPORT) Program. These activities will increase the number of clinicians with expertise in SCD, promote the use of evidence-based practices, and improve the quality and consistency of care across the region. All CCSs will participate in annual QI activities designed to improve access to care and health outcomes for people living with SCD. SiNERGe will use data from the Globin Research Network for Data and Discovery (GRNDaD) registry, electronic health records, and community partner reporting systems to monitor progress toward project goals. Key measures will include the number of individuals served, use of disease-modifying therapies, emergency department utilization, high school graduation rates, employment outcomes, and engagement in comprehensive SCD care. Results will be shared through a regional dashboard to support ongoing QI activities and accountability across the collaborative. The target population includes children, adolescents, and adults with SCD throughout the Mid-Atlantic region, including those who are not currently connected to comprehensive SCD care. By August 31, 2030, SiNERGe aims to serve at least 30% of individuals with SCD in the region, expand access to comprehensive services, increase the use of disease-modifying therapies by 5% above baseline, and strengthen clinical-community partnerships.
