Looking Ahead: Changes Approved for 2025 Registry Data Standards

The High-Level Strategic Group (HLSG) voted earlier this month to approve changes to the NAACCR Data Standards and Data Dictionary (DS&DD) for use beginning with the 2025 diagnosis year (NAACCR v25). The changes include two new site-specific data items (SSDI) as well as a new Pediatric Data Collection System (PCDS). Also approved was the retirement of 30 data items no longer collected by standard-setters. This makes a total of 76 data items retired in the past three years in a joint endeavor by standard-setters to eliminate data items that are no longer used in an effort to reduce cancer registrar burden.

Pediatric Data Collection System

The PCDS was developed by the Pediatric Site-Specific Data Item Work Group under the NAACCR Standardization and Registry Development (SRD) Steering Committee. The Work Group is comprised of representatives from NAACCR, NCI, and CAP, as well as cancer registrars from pediatric specialty hospitals. The PCDS will allow registries in the U.S. to collect pediatric stage according to the Toronto Staging Guidelines for pediatric cancer. The guidelines were developed in 2016 to provide a standardized methodology for population-based cancer registries to collect staging for pediatric cancer. They have been implemented by cancer registries around the world, and their addition to the NAACCR standards will bring U.S. data into alignment with the international cancer surveillance community. Data collection requirements for the PCDS are under development by standard-setters and will be available later this year.

NAACCR Data Standards and Data Dictionary

The NAACCR DS&DD define the data elements collected by cancer registrars across North America. These Standards enable reporting and sharing of cancer data between and among hospital registries, population-based central registries, national cancer programs, and data users. NAACCR has established a collaborative change management process for vetting and approving changes to the Standards, including the adoption of new data items and changes to existing data items. The Mid-Level Tactical Group manages the change control and implementation process, receiving and investigating proposals for revisions and making formal recommendations to the HLSG. Both the MLTG and HLSG are made up of representatives from the CDC National Program of Cancer Registries (NPCR), NCI Surveillance, Epidemiology, and End Results Program (SEER), American Joint Committee on Cancer (AJCC), the National Cancer Database (NCDB), the National Cancer Registrars Association (NCRA), Canadian Council of Cancer Registries (CCCR), College of American Pathologists (CAP), and NAACCR.

More information on the changes approved for NAACCR Standards v25 will be available in the NAACCR Implementation Guidelines later this year.