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.
How can the SCDC program improve the lives of people with SCD?
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. For example, while early screening, diagnosis, and treatment have increased the lifespan for people with SCD, there are fewer than five hematologists seeing adult patients with SCD in California, limiting access to proper care and treatment for many adults. The SCDC program will use this type of key information to educate stakeholders about the gaps in care for people with SCD.
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