NCCR Data Now Available in SEER*Stat

For the first time, a limited set of data from the National Childhood Cancer Registry (NCCR) is now available for analysis through SEER*Stat!

The NCCR was developed under the National Cancer Institute (NCI)’s Childhood Cancer Data Initiative (CCDI) to identify and follow childhood cancer cases in the United States. Its primary goal is to provide a platform to better understand the causes, outcomes, effective treatments, and later effects of cancer among children, adolescents, and young adults in the United States. NAACCR has been supporting NCI by working as the coordination center for the NCCR.

This first release of NCCR data in SEER*Stat, includes incidence data from 16 of the 25 central registries participating in the NCCR. It covers 48% of the US population ages 0-39 and includes adolescent and young adult patients diagnosed with cancer from 1997 to 2020. Survival data is available from 13 registries. The next release, anticipated in Spring 2024, will include data from a larger number of registries.

Statistics available for the NCCR data include frequencies (counts), incidence rates (counts, populations), and survival (five types of survival shown as percent or proportions). The results are provided in a table format with spreadsheet features (view, print, export to text file, and copy-and-paste to other software). Over 70 high-quality variables on demography, tumor characteristics, initial treatment and survival information are included. Geographic information is not available to protect confidentiality, however, statistics can be calculated for all registries combined.

SEER*Stat is a statistical software that uses raw data to calculate cancer statistics, including rates, trends and survival. To help protect patient confidentiality, the NCCR data cannot be downloaded and will not display case-level or patient-level data; it can only be used to display the results of statistical analytic features in a table format. Tutorials are available describing how to use SEER*Stat.

Access to the NCCR Data in SEER*Stat is included with the SEER Research Plus Data which requires user authentication through eRA Commons or a US Department of Health and Human Services (HHS) account. Investigators from research institutions must login with a valid institutional email address, provide the institution’s Signing Official contact information, and agree to the Data Use Agreements and Best Practices Assurances. Visit the SEER website for instructions on How to Request Access to Research Plus and NCCR Data.

Questions? Contact SEER*Stat Technical Support.