Introducing the Sickle Cell Data Collection Project

The SCDC program, which has been ongoing under the CDC since 2015, collects health information about people living with sickle cell disease. All personally identifying information is removed, leaving raw data that allows the SCDC project to study the long-term trends in diagnosis, treatment, and healthcare access in the United States. There are currently 14 states involved in this program and Arizona is one of the newest states to join.

In Arizona, Phoenix Children’s is partnering with key community members on this critical data collection project:

• Banner Health
• Arizona Department of Health Services – Newborn Screening Program
• Arizona State University – Center for Health Information and Research
• Sickle Cell Foundation of Arizona
• Community representatives

Our goal is to assess where sickle cell patients live around our state, what services they utilize and where, and what obstacles exist which stand in the way of sickle cell patients receiving appropriate care. The outcomes of this data collection project will help inform future policy change.

We look forward to sharing stories of our progress with the sickle cell community, as well as the results at the end of this five-year project.