Tracking Pediatric and Young Adult Cancer Cases
CDC’s Sandy Jones tells the story of her son Noah’s cancer diagnosis in this video. She also explains how NPCR is working to increase the speed of cancer data reporting to help children with cancer get the support they need as soon as possible.
Improving Reporting of Childhood and Young Adult Cancer
Although cancer in children is rare, compared with cancers typically diagnosed in adults, cancer is still the leading cause of death from disease in this age group. About 15,000 children and adolescents younger than 20 years and over 21,000 young adults aged 20 to 30 years are diagnosed with cancer each year in the United States. The good news is that cancer death rates among children from birth to age 14 years have dropped nearly 70% over the past 40 years. CDC’s Childhood Cancer STAR Project is developing a new data collection system in CDC’s National Program of Cancer Registries (NPCR) to enable rapid case reporting and contribute to understanding of the disease and best treatment options.
The Childhood Cancer STAR Project
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act aims to advance the understanding of and care for cancer in children, adolescents, and young adults. It requires CDC to improve reporting of new cases of cancer in these age groups.
CDC’s Childhood Cancer STAR Project is improving the data exchange infrastructure so that data about cancer in children, adolescents, and young adults can be reported faster.
It takes about 2 years to collect and report data about a cancer diagnosis to CDC, regardless of age. The Childhood Cancer STAR Project is developing and implementing the infrastructure for facilities where childhood cancer is diagnosed to support computer systems that speed up the reporting process. More current information about cancer can improve understanding of the disease, increase enrollment in clinical trials, and connect patients and their families to helpful resources more efficiently.
What Is a Cancer Registry?
A cancer registry collects information about people who are diagnosed with cancer and the treatments they receive. All 50 U.S. states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island Jurisdictions have a cancer registry. The data they collect give health researchers and other professionals an idea of which groups of people get certain kinds of cancer, and what needs to be done to reduce cancer.
Project Plans
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was signed into law specifically to help address the burden of childhood cancer.
As part of CDC’s data modernization initiative, the first phase of this project focused on understanding the existing registry process and best practices for data exchange between places where cancer is diagnosed and cancer registries In the fall of 2018, CDC developed a data collection and reporting system to build on the existing cancer registry infrastructure. The result was a secure cloud-based infrastructure called the National Oncology rapid Ascertainment Hub (NOAH), which allows laboratories to send data to central cancer registries.
The next phases include—
- Combining data collection and processing features to find and check cases automatically.
- Testing the system in a few states.
- Making sure the new system works well when used by multiple registries.
Working With the National Cancer Institute
In addition, CDC and the National Cancer Institute (NCI) are working with cancer registries to improve understanding of cancer in children, adolescents, and young adults. Read about in the NCCR and STAR Overview: CDC and NCI Collaborate on Unique Initiatives for Pediatric Cancer Research. [PDF-181KB]