Summer 2022 NAACCR Narrative Leave a comment

Fernanda Silva Michels, MSc, PhD, CTR

Program Manager of Data Quality and Integration



The National Childhood Cancer Registry (NCCR) was developed under the NCI 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 U.S.

The NCCR contributes to the CCDI data ecosystem by serving as a linked infrastructure of central cancer registry data that will integrate several other childhood cancer data sources like research centers, heath care administrations, and others—to enhance access to and utilization of childhood cancer and survivorship data. Currently, 24 central cancer registries are part of NCCR, including all SEER registries and five NPCR registries (Florida, Michigan, Ohio, Pennsylvania, and Tennessee).

In 2022, the NCCR formed a Data Quality Working Group (DQ WG) to develop appropriate methods to monitor quality and consistency in the NCCR data. The DQ WG is one of four NCCR working groups: Data Quality, Metadata, Data Products, and Data Access & Release. Each working group includes clinicians, researchers, epidemiologists, data specialists, and central cancer registries representatives. Gonçalo Forjaz (Westat) and I co-chair the DQ WG.

One challenge to working with pediatric cancer data is the lack of a standardized staging system. Clinicians use disease-specific staging systems that rely more heavily on prognostic factors than on tumor growth, as adult cancer staging does. As a result, cancer registries have long struggled with documenting stage for pediatric cancers. The Toronto Pediatric Cancer Stage Guidelines were developed by consensus and published in The Lancet Oncology in 2016. In fact, that same year the Guidelines were presented at the NAACCR Annual Conference in St. Louis, MO.

Over the past several months, the DQ WG has been collaborating with the NCCR Metadata Working Group, led by Dr. Sumit Gupta (The Hospital of Sick Children – University of Toronto) and Dr. Todd Gibson (NCI), to identify additional prognostic factors that could be collected in order to derive Toronto Staging. We also enlisted the expertise of Angela Costantini, a CTR specializing in pediatrics, to provide input for new Site-Specific Data Items (SSDI) to track prognostic features important to staging pediatric tumors. Many of these data items are already collected by CTRs at pediatric facilities, but in a non-standardized way. Suggestions for the new SSDIs were presented at the NAACCR Summer Forum. This work evolved into a well-defined, structured approach to SSDIs for the Toronto Pediatric Cancer Stage guidelines.

Jennifer Ruhl, who chairs the NAACCR SSDI Workgroup, with the help of Ms. Costantini, Dr Gupta, and Dr. Lindsay Frazier (Dana-Farber/Boston Children’s Cancer and Blood Disorders Center – Harvard Medical School), developed a framework for incorporating the new data items into the NAACCR data standard. Joanne Aitken and Danny Youlden, from the Australian Pediatric Cancer Registry, also provided input based on their experience, Australia being one of the only countries currently using the Toronto staging guidelines at the population level. The data items that the SSDI Work Group recommended have been collated into a document titled “Implementation Guide for Toronto Staging.”

The SSDI Work Group submitted a request to the Mid-Level Tactical Group on July 1 for consideration of these new stage and non-stage prognostic data items for implementation in 2024. In September 2022 the Kentucky Cancer Registry will field test the new data items in a pediatric hospital setting.



In addition to the proposed new data items, there are many other non-standardized data items collected by pediatric registries. The SSDI WG has formed a sub-group, the Pediatric SSDI WG, to focus exclusively on pediatric data items. The work group will explore standardization of non-stage pediatric data items and possible inclusion in the NAACCR data standard. The Work Group’s first goal is to recruit pediatric registrars to help in the review, as well as in the development and testing of the Toronto Staging data items recommended for implementation in 2024.

Pediatric CTRs who are interested in being part of the new Pediatric SSDI WG, please contact me at

Visit NCCR*Explorer to access incidence and survival statistic based on NCCR.




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