Tracking Pediatric and Young Adult Cancer Cases

Photo of eight children

15,000 children younger than 20 years are diagnosed with cancer each year in the United States.

Although pediatric cancer death rates have dropped by nearly 70% over the past 40 years, cancer is still the leading cause of death from disease among children from birth to age 14. About 15,000 children younger than 20 years are diagnosed with cancer each year in the United States.

Cancer in children is rare, compared with cancers typically diagnosed in adults. No single center will treat enough children with the same type of cancer to make clinical data in any one geographic area meaningful. CDC’s STAR Project aspires to improve this issue through a rapid data collection system.

The Childhood Cancer STAR Project

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Actexternal icon was signed into law specifically to help address the burden of childhood cancer. The law requires the Centers for Disease Control and Prevention (CDC) to expand capacity within the National Program of Cancer Registries (NPCR) to help cancer registries collect and make the data on pediatric cancer cases available within weeks of diagnosis.

When a child becomes sick, they go to the doctor for testing. The lab confirming a cancer diagnosis sends the data to State Central Cancer Registry. Sometimes, there is no cancer expert to continue treatment in the state and the patient is referred to an out-of-state cancer expert.  It can take up to 2 years before this interstate data is provided to CDC. The CDC’s Childhood Cancer STAR Project provides data faster to support pediatric cancer research.

CDC’s Childhood Cancer STAR Project provides data faster to support pediatric cancer research.

Now, it takes at least 2 years to collect complete data about a cancer diagnosis, regardless of age. The Childhood Cancer STAR Project aims to allow clinics to report cancers diagnosed in children, adolescents, and young adults faster than 2 years. With more recent information about young people with cancer, public health professionals can increase enrollment in clinical trials and plan programs that help cancer patients get the care they need.

What Is a Cancer Registry?

A cancer registry collects information about people who are diagnosed with cancer and the treatments they receive. Each state in the United States has a cancer registry. The data they collect give health researchers and professionals an idea of which groups of people get certain kinds of cancer, and what needs to be done to reduce the cancer burden. The STAR project is a partnership between CDC and the cancer registries in California, Florida, Georgia, Kentucky, Louisiana, Massachusetts, Minnesota, Nebraska, New Hampshire, New Jersey, Ohio, Rhode Island, Texas, Utah, and Virginia.

Project Plans

Photo of eight teenagers looking at their cell phones

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was signed into law specifically to help address the burden of childhood cancer.

In the fall of 2019, CDC began developing an informatics system to build upon the existing cancer registry infrastructure.

The first phase of this project includes understanding the existing registry process and best practices for putting the informatics system into action.

The next phases include pilot testing and scaling the new system to multiple registries.

Page last reviewed: August 24, 2021