The Sickle Cell Disease Implementation Consortium (SCDIC) was established in 2016 to improve the health and well-being of adolescents and young adults with sickle cell disease (SCD) in the US through the development of needs assessments among stakeholders and subsequent multi-modal interventions aimed at improving the rate at which patients with SCD receive routine care.
The SCDIC program will be implemented in two phases. Phase I will utilize the methodologies of implementation research to conduct needs-based community assessments of the barriers to care for patients with SCD and to begin the development of a registry of SCD patients with clinical and patient-reported outcomes. In Phase II, implementation science will drive the design of research studies that will be conducted to address issues of importance identified from the needs assessments. The SCD Registry will also continue throughout Phase II with the goal of enrolling 2400 patients from the eight participating clinical centers.