NCI Launches Innovative New Platform for Comprehensive Childhood Cancer Data

The National Cancer Institute Surveillance Research Program announced the launch of the latest product to come out of the National Childhood Cancer Registry (NCCR), a collaborative effort of NCI, NAACCR, and 28 central cancer registries.

The NCCR Data Platform includes data from individuals diagnosed with an initial cancer under age 40 from 1995 to 2021 from the following Central Cancer Registries: California (Greater Bay, Greater California, Los Angeles), Colorado, Connecticut, Georgia, Hawai’i, Idaho, Illinois, Iowa, Kentucky, Louisiana, Massachusetts, Michigan, New Jersey, New Mexico, New York, Seattle-Puget Sound, Tennessee, Texas, Utah, and Wisconsin.

These NCCR registries represent 58% of all U.S. children, adolescents and young adults (AYA) aged 0-39 based on the 2020 U.S. population. In addition to registry data, the Data Platform supports exploration of data from other sources like pharmacy and medical claims, social drivers of health, Children’s Oncology Group, Virtual Pooled Registry, and electronic health record systems and other clinical information systems from treating facilities that provide more in-depth information on the patient’s cancer journey and survivorship. An individual person may have multiple cancers over the life course; statistics in the Data Catalog are reported for unique persons or unique person-cancer cases as appropriate.

Researchers can use the Data Platform to submit requests for custom datasets for analysis and visualize aggregate statistics about available data for hypothesis generation and planning study designs. Account activation and data requests undergo a robust au­thentication and authorization process, including IRB determination for access to patient-level data.

The NCCR Data Platform is the latest in a series of new products designed to enhance public and research use of childhood, adolescent, and young adult cancer data. NCCR*Explorer is a publicly available resource that provides pre-calculated incidence, prevalence, and survival data by patient demographics and allows users to conduct comparisons across cancer types. NCCR data is also available in SEER*Stat to authenticated users, statistics available include frequencies (counts), incidence rates (counts, populations), and survival (five types of survival shown as percent or proportions). Learn more about all three NCCR data products at https://nccrexplorer.ccdi.cancer.gov/data-products.html.

NAACCR staff provide administrative and technical support for the NCCR initiative, participating registries, and a number of working groups. It also facilitates the involvement of registries and other stakeholders in the development of the NCCR and its data products. NAACCR would like to recognize the contributions of all the central registries who participate in both the NCCR and the Virtual Pooled Registry (VPR), without whom data products like the NCCR Data Platform would not be possible.

To apply for an account to explore the NCCR Data Platform, visit the Data Platform website. Researchers and students can now use this rich data resource to advance our understanding of the causes, late effects, and emerging trends in childhood and AYA cancer.