The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q) - The Advancing Sickle Cell Excellence in the NortheasT (ASCENT) Network is a regional initiative supported through the Health Resources and Services Administration's Sickle Cell Disease Regional Care Excellence (SoRCE) Program. Building upon longstanding partnerships across the New England Sickle Cell Consortium, the ASCENT Network will strengthen access to high-quality, comprehensive care for individuals living with sickle cell disease (SCD) throughout Connecticut, Maine, Massachusetts, New Hampshire, New York, Rhode Island, and Vermont. The network is led by Boston Medical Center and Brown University Health, which serve as Regional Coordinating Hubs working collaboratively with four Clinical-Community Spokes, three Clinical Affiliates, and four sickle cell disease-focused community-based organizations (CBOs). The ASCENT Network will improve the lives of individuals living with SCD across the Northeast by strengthening access to comprehensive, coordinated, evidence-based care. Although advances in treatment have improved outcomes, many individuals continue to experience barriers to comprehensive care. Access to specialty services varies across the region, transitions from pediatric to adult care remain challenging, and many healthcare professionals have limited experience caring for individuals living with SCD. These gaps contribute to preventable complications, avoidable emergency department visits and hospitalizations, and reduced quality of life. The ASCENT Network will strengthen regional capacity to deliver comprehensive, evidence-based care through coordinated partnerships, workforce education, quality improvement, and community engagement. Regional Coordinating Hubs will provide leadership, technical assistance, workforce development, quality improvement support, and data-informed performance monitoring across the network. Clinical-Community Spokes will expand education, care coordination, and community outreach through partnerships between SCD clinical centers and trusted CBOs, improving access to services closer to where individuals live. Clinical Affiliates, including centers serving more rural communities, will receive mentorship, technical assistance, and education to strengthen local expertise and expand access to comprehensive specialty care for patients living more distant from large clinical centers. The network will provide multidisciplinary education through case-based Project ECHO sessions, Lunch and Learn educational programs, an annual educational symposium, the development and dissemination of clinical resources. The network will develop a collaborative SCD community for physicians, advanced practice providers, nurses, pharmacists, psychologists, social workers, community health workers, and other members of multidisciplinary care teams. Participating organizations will share successful practices, implement standardized evidence-based care, and use performance measures to monitor progress and support continuous quality improvement. CBOs will partner with SCD centers in the region to strengthen patient education, outreach, resource navigation, and community engagement. Patients and caregivers will serve as active partners through a Patient and Family Advisory Council and will help identify educational and clinical priorities for the annual regional educational symposium and other network activities. The ASCENT Network will serve children, adolescents, adults, families, and caregivers throughout the Northeast. By strengthening regional partnerships, expanding workforce education, increasing collaboration between healthcare organizations and CBOs, promoting evidence-based care, and supporting continuous quality improvement, the ASCENT Network will improve access to comprehensive SCD services and strengthen the capacity of healthcare organizations to meet the needs of all individuals living with SCD disease across the region.
