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.

The SCDIC Consortium conducts research studies to understand different aspects of how people are affected by a sickle cell disease diagnosis. The studies include:

• a patient registry of over 2,400 participants that obtains medical information and patient reported outcomes at several points in time
• a study aimed at improving adherence among SCD patients and increasing SCD provider knowledge through the use of two mobile applications
• a study to identify reasons individuals with SCD might not be affiliated with health care
• a study aimed at implementing individualized pain plans with patient and provider electronic health record access for SCD patients in the emergency department
• a needs assessment which used interviews, focus groups, and surveys to determine and address the needs of people with SCD