Data Sharing Practices in U.S. Cancer Registry: Results of NAACCR Survey

By Castine Clerkin, MS, CTR | September 8, 2025

In May 2026, NAACCR conducted a survey of U.S. registries to better understand the variation in data release practices. Forty-one registries responded to the survey (76% response rate) and data was analyzed by Betsy Kohler, in her role as consultant to NAACCR. The survey included questions about the primary data release to studies approved by…

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Helping Vendors Help You

By Jim Hofferkamp, BA, CTR | September 1, 2025

Timely implementation of hospital registry software is essential for seamless data transmission and high-quality cancer surveillance. When software delays occur at the hospital level, the effects ripple throughout the cancer surveillance system, creating unnecessary challenges for central registries. Effective collaboration between central registries and hospital software vendors can minimize disruptions and support a stronger data…

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Central Registry User Data Dictionary and Edits Metafile

By Lori Havener, CTR | August 18, 2025

The Mid-Level Tactical Group (MLTG) manages the cancer surveillance change control process to ensure an efficient and timely change management process. There are many steps in this process including monitoring the timing of products released. One of the products is the timely release of central registries’ user-defined data dictionaries and registry-specific edits metafiles. Central registries…

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Privacy Preserving Record Linkage (PPRL): Coming Soon to the Virtual Pooled Registry

By Castine Clerkin, MS, CTR | November 10, 2025

The current Virtual Pooled Registry (VPR) workflow requires registries to download an encrypted study data file and perform a clear-text linkage using Personally Identifiable Information (PII). To broaden the scope, and enhance the security of the VPR, NCI has encouraged a transition to Privacy Preserving Record Linkage (PPRL). What is PPRL? PPRL is a technique…

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NCCR Fall Feature

By Fernanda Michels | November 3, 2025

The NCCR Fall Feature highlights key advancements and initiatives within the NCCR community, including highlights on the inaugural Data Jamboree, new study on clinical trial enrollment disparity using NCCR data, recent updates to NCCR*Explorer and SEER*Stat tools, and important upcoming deadline for NCCR registry participants Call for Data. Data Jamboree: Enhancing Childhood Cancer Data Sharing…

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CBTRUS and Cancer Registries: 35 Years of Collaboration

By Carol Kruchko | October 27, 2025

We couldn’t have done it without you! This sums up our relationship with the surveillance community, its stakeholders, and its supporting community. For over 35 years, the Central Brain Tumor Registry of the United States (CBTRUS) has worked with you to quantify the burden of brain and other central nervous system (CNS) tumors on the…

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Fernanda Michels | October 13, 2025

New Study Highlights Enrollment Disparities in Children’s Oncology Group (COG) Trials Using NCCR Data

By Peter Baade | October 6, 2025

CaRDO: A new tool for publishing population-level cancer statistics online.

By Fernanda Michels | September 29, 2025

NAACCR Initiatives Supporting Pediatric and AYA Cancer Research

By Angela Martin | September 22, 2025

NAACCR Education and Training Upcoming Events

By Fernanda Michels | September 15, 2025

Operations at the Brazilian Populational-Based Cancer Registry, São Paulo City: A Conversation with Fernanda Michels

OUR MISSION

Actionable content that unites cancer registries.

The Narrative strives to provide you with information you can use to enhance and strengthen your cancer registry. Look to the Narrative for the latest cancer surveillance news, trends, advances in technology, and latest educational opportunities.

OUR VISION

Make every cancer count.

Cancer affects thousands of people across North America every year. Each cancer case must contribute to our knowledge and understanding so that we may reduce the burden of these diseases. Narrative provides a platform for the cancer surveillance community to collaborate and share data that will improve health outcomes.

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Fernanda Michels | October 13, 2025

New Study Highlights Enrollment Disparities in Children’s Oncology Group (COG) Trials Using NCCR Data

By Fernanda Michels | September 29, 2025

NAACCR Initiatives Supporting Pediatric and AYA Cancer Research

By Fernanda Michels | September 15, 2025

Operations at the Brazilian Populational-Based Cancer Registry, São Paulo City: A Conversation with Fernanda Michels

By Jim Hofferkamp, BA, CTR | September 1, 2025

Helping Vendors Help You

By Recinda Sherman, PhD, MPH, ODS-C | August 11, 2025

Now Available! CiNA Statistics Update

CANCER REGISTRY SPOTLIGHT: MICHIGAN

Successful Linkage Between Registry Database and LexisNexis

In our ongoing commitment to enhance the quality and accessibility of data, we are thrilled to announce the successful linkage between our registry database and LexisNexis. This integration represents a significant step forward in streamlining our data processes and expanding our analytical capabilities.

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Jim Hofferkamp, BA, CTR | September 1, 2025

Helping Vendors Help You

By Matthew Mayfield, MS, ODS | August 4, 2025

A Practical Guide for Central Registries Updating to a V25B Metafile

By Angela Martin | July 21, 2025

NAACCR Education and Training Upcoming Events

By Lori Havener, CTR | July 7, 2025

Standardization and Registry Development Steering Committee: Modular Records Task Force

By Mona Highsmith, BA | June 16, 2025

2025 NAACCR Board of Directors Election Results