Sickle Cell Data Collection (SCDC) 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.
How can the SCDC program improve the lives of people with SCD?
What will the SCDC program help us better understand?
Where people with SCD live
- Can we help patients receive care that is closer to where they live?
- How does availability of public transportation influence access to care?
Transition from pediatric to adult care
- Why do transitioning patients with SCD have the most severe symptoms and higher use of healthcare services?
- Do additional conditions during childhood, like asthma and stroke, lead to poor health as a young adult?
- What are the challenges of diagnosing patients born outside of the United States or before newborn screening began in the United States?
- What are the differences in complications and death rates among people of different races/ethnicities?
- What are common complications for patients as they age?
- Are physicians screening for common diseases like cancers and heart disease among older patients with SCD?
Use of healthcare services
- What preventable complications lead to frequent use of healthcare services and how can we reduce these complications?
- Which treatments and healthcare practices help to reduce how often patients require healthcare services?
How does the SCDC program collect data?
- Newborn screening records,
- Administrative datasets (for example, hospital discharge, emergency department, and state Medicaid data),
- Death records, and
- Medical charts.