Looking to the Future: Changes Approved for 2027 NAACCR Data Standards

As we move into Spring, many cancer registries are preparing to begin 2026 abstracting, but registry standard setters are already looking ahead to 2027 – and beyond! The High-Level Strategic Group (HLSG) voted last month on changes to the NAACCR Data Standards and Data Dictionary (Standards) for use beginning with the 2027 diagnosis year (NAACCR v27).

NAACCR Data Standards and Data Dictionary

The NAACCR Standards 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. They also try to ensure that the data collected by hospital registries meets the needs of both the clinical and surveillance communities to avoid duplicative or conflicting rules for data collection. 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 (MLTG) 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), Commission on Cancer (CoC), National Cancer Registrars Association (NCRA), Canadian Council of Cancer Registries (CCCR), College of American Pathologists (CAP), and NAACCR.

Changing Data Needs

As research into the causes and treatment of cancer spur innovations that improve outcomes for people affected by cancer, registries must adapt to meet the ever-growing demand for real-world data. That means ensuring we collect data that aligns with current clinical practice, including markers that affect prognosis and treatment decisions. Balancing this need to “change with the times” is the imperative to ensure registry data is consistent and comparable over time so that researchers and epidemiologists can accurately assess long-term cancer trends and measure the large-scale impact of interventions like screening and early detection, HPV vaccination, and lifestyle.

What’s Coming for v27?

The MLTG reviewed more than 120 proposals for changes to the NAACCR Standards for v27 – but not all of them made the cut. Proposed changes undergo rigorous scrutiny by not only the MLTG and HLSG, but also NAACCR technical groups comprised of cancer registrars, software developers, and other subject matter experts. Proposed new data items also undergo feasibility testing to assess the potential quality and completeness of the data to be collected. The changes approved for v27 include:

• New/Revised SSDIs
  • *New* Thoracic Nodal Stations
  • *New* SSDIs for minor salivary gland & rectal tumor locations
  • Microsatellite Instability (added Kidney)
  • Mitotic Rate & Ulceration (added Melanoma Conjunctiva)
  • Reinstatement of HER2 IHC/ISH with minor revisions
  • Revisions to High Risk Cytogenetics
• Other Changes
  • Changes to Cancer Status & Recurrence
  • Removing restrictions on Secondary Diagnosis codes
  • Simplifying Class of Case by removing codes 11 & 12
  • Simplifying Diagnostic Confirmation by removing code 3

This is not a complete list of all approved changes. Not all data items are required by all standard setters, and standard setters and central registries may implement additional data items outside the NAACCR Data Dictionary. Reporting facilities should refer to their state central registry and to the Commission on Cancer for reporting requirements. More information on the changes approved for NAACCR Standards v27 will be available in the NAACCR Implementation Guidelines later this year.

Looking Ahead to 2028 & Beyond

Proposals for changes to the NAACCR Standards for 2028 are due to the MLTG by July 1 of this year. The MLTG is also beginning to lay the groundwork for the transition from ICD-O-3 to ICD-O-4, which is expected to go into effect in the US in 2029 or 2030. It will be the first major ICD-O transition since 2000, and the impact on registry systems is expected to be significant. Read more about ICD-O-4 in this article published in the journal, Cancer Epidemiology.

In addition, NAACCR is taking steps to modernize the structure of its data exchange layout (NAACCR XML) to allow for the transmission of multiple treatments (e.g., multiple surgical procedures) that are already being collected in many registries. Currently, NAACCR XML allows only one entry per cancer for each type of treatment (surgery, chemotherapy, etc.) to be transmitted. This means central registries and the NCDB are missing out on important information that registrars are already collecting. This move toward more event-based reporting of treatment aligns with NAACCR’s priorities to support interoperability with electronic health records.

Enabling the Registry of the Future

NAACCR recognizes the challenges cancer registries face in collecting timely, high-quality data in the face of changing data standards. We are working with surveillance partners to develop new tools and processes to enable registries to take advantage of emerging technologies to improve workflows and find efficiencies in data collection. We are dedicated to continuing our mission of working together to make every cancer count!