What is sickle cell surveillance?

Surveillance is finding out how many people have a disease. It is also about finding out how a disease affects people’s lives. The Centers for Disease Control and Prevention (CDC) have a sickle cell surveillance program. It is called the Sickle Cell Data Collection (SCDC) Program. Indiana is working with the CDC on this program.

What is the Goal?
The goal of this program is to improve the health of people with sickle cell. The program collects information to improve care for people with sickle cell. For example, the program collects information about where people with sickle cell disease live. It also collects the locations of health care providers. This will tell us how far people with sickle cell disease live from health care.

People who make the laws can also use this information. They can look at where the need is for people with sickle cell. It can help them to decide what programs to fund.

Where does the information come from?
The program collects information about people with sickle cell from many places. These include:

• Newborn screening records.
• Hospital and emergency room records.
• Death records.
• Medical charts.

Where can I learn more?
You can learn more about the program by clicking here or by calling the Indiana Hemophilia and Thrombosis Center at 317-871-0000.