Our Progress

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