Sickle Cell Data Collection Program

The Sickle Cell Data Collection (SCDC) program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD.

Early screening, diagnosis, and treatment have allowed people with SCD to live much longer, making now a more important time than ever to study SCD health across the life course.

The SCDC program strives to improve health outcomes for people with SCD. By documenting health information of patients with SCD in the United States over time, the program can identify critical gaps in diagnosis, treatment, and healthcare access for people with SCD.