Winter 2021 NAACCR Narrative Leave a comment

North American Report / November 2020
Prepared by Betsy Kohler, Donna Turner & Chuck Wiggins


Betsy Kohler, Donna Turner and Chuck Wiggins presently serve as North American representatives on the Board of Directors for the International Association of Cancer Registries (IACR). Betsy, Donna and Chuck prepared the following summary of cancer surveillance activities in North America in 2020 for the IACR Board meeting that was held on November 30, 2020.

COVID-19 influenced, but most certainly did not halt the progress of cancer surveillance in North America in 2020. Across the continent, cancer registry professionals – most working from makeshift home offices – successfully met the many challenges of conducting population-based cancer surveillance in the context of a global pandemic.

The North American Association of Central Cancer Registry (NAACCR) 2020 Annual Conference, originally scheduled to be held in Philadelphia, Pennsylvania USA, was successfully convened on-line from June 23-25. Although the original agenda was necessarily scaled-back, the conference featured superb talks in several plenary sessions, as well as on-line poster presentations. NAACCR’s Constance L. Percy Award was presented to Dr. Martha Linet and Ms. Annelie Landgren, both from the US National Cancer Institute. Dr. Chuck Wiggins, Director of the New Mexico Tumor Registry (USA) received the Calum S. Muir Memorial Award.

As a second wave of COVID-19 infections spread across the continent during the fall of 2020, the NAACCR Board of Directors decided to replace the 2021 Annual Conference (scheduled for Palm Springs, California USA) with the 2021 NAACCR Summer Forum. The Forum will be held on-line from June 15-17, and will be followed by the on-line NAACCR business meeting on June 18. In anticipation of a return to normalcy, the 2022 Annual Conference has been tentatively scheduled to be held in-person in Boise, Idaho, USA.

NAACCR Board Members, Steering Committee members, and other professionals continued to work on the first draft of the NAACCR 2021-2025 Strategic Management Plan (SMP). The updated document will replace the current SMP that guided NAACCR activities from 2015-2020. The new SMP will be further discussed and edited in the coming months and is scheduled to be released in the summer of 2021.

NAACCR’s on-line series of lectures and webinars provided stimulating presentations throughout 2020. NAACCR Talks are free webinars that address topics of interest to the cancer surveillance community. This year’s presentations covered a wide range of topics, including the social determinants of health, survival analyses, data visualization, staff recruitment and retention, and cancer patterns among American Indian and Alaska Native populations. In addition, NAACCR’s webinar series, available by subscription, enlisted top subject matter experts to provide instruction that primarily focused on issues relating to data collection.

Each year in the Unites States, NAACCR partners with the National Cancer Institute, the Centers for Disease Control and Prevention, the American Cancer Society, the National Center for Health Statistics and other invited scientists to produce the Annual Report to the Nation on the Status of Cancer. This annual publication documents recent trends in cancer incidence and mortality rates, and typically features and in-depth look at a cancer-related topic of interest. This year’s report was published as two separate articles in the journal, Cancer. The first article summarized cancer statistics in recent years (Henley SJ, Ward EM, Scott S, et al. Annual Report to the Nation on the Status of Cancer, Part I: National Cancer Statistics. Cancer 2010; 126(10):2225-2249. PMID: 32162336). The second article provided an overview of progress against cancer as assessed by metrics defined in the Healthy People 2020 guidelines (Henley SJ, Thomas CC, Lewis DR, et al. Annual Report to the Nation on the Status of Cancer, Part II: Progress Toward Healthy People 2020 Objectives for 4 Common Cancers. Cancer 2010; 126(10):2250-2266. PMID: 32162329).

The Virtual Pooled Registry Cancer Linkage System (VPR-CLS) initiative was created to provide a single source for linking research and administrative records with cancer registries in the United States. Under the capable of direction of NAACCR’s Castine Clerkin, VPR-CLS activities expanded over the past year and several policies and procedures were revised and enhanced. Six new central cancer registries recently joined the VPR-CLS initiative, bringing the total number of participating registries to 44. Several projects are now utilizing this resource, and the first publication to emerge from a VPR-CLS-based investigation was submitted to a scientific journal for peer-review.

At year’s end, NAACCR issued its annual call for nominations for members to serve in leadership positions. In 2021, members will choose a Treasurer to serve a two-year term. Three Representatives-At-Large will also be elected to two-year positions on the organization’s Board of Directors. The election will be held in the early months of 2021 and results will be formally announced at the 2021 NAACCR Summer Forum in June

Progress continued on NAACCR’s migration to a new standard file format for cancer data exchange. The legacy fixed-width file exchange format will be retired in 2021, to be replaced by XML-based standards that are outlined in Version 21 of the NAACCR Data Standards and Data Dictionary.

NAACCR is working closing with the US National Cancer Institute (NCI) to create the National Childhood Cancer Registry. Existing cancer registries that participate in NCI’s Surveillance, Epidemiology, and End Results (SEER) Program and the US Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) will serve as the cornerstone for this ambitious project. Genomic, clinical, and epidemiological data will be drawn from many other sources, including the Children’s Oncology Group, to augment existing cancer surveillance data. Once combined, this information will create a robust infrastructure to support scientific research of childhood malignancies.

In Canada, the Canadian Council of Cancer Registries deferred their in-person Annual General Meeting from May to the end of October due to the COVID-19 pandemic, at which time the meeting was held virtually for the first time ever. Common challenges were discussed, including updated coding requirements and the transition to AJCC-8 staging, recruitment and retention of cancer registrars, and the demands for increased timeliness of data to aid in understanding the impact of the COVID-19 pandemic on cancer patients and cancer services. One exciting development was the creation of a portal for Council activities, facilitating sharing of tools and documents. The portal was introduced in mid-October. Publications of note include the Canadian Cancer Statistics publication; the 2020 estimates were published in the Canadian Medical Association Journal (Brenner DR, Weir HK, Demers AA, Ellison LF, Louzado C, Shaw A, Turner D, Woods RR, Smith LM; for the Canadian Cancer Statistics Advisory Committee. Projected estimates of cancer in Canada in 2020. CMAJ March 02, 2020 192 (9) E199-E205), and a special report on lung cancer was produced and shared in the fall (Canadian Cancer Statistics Advisory Committee. Canadian Cancer Statistics: A 2020 special report on lung cancer. Toronto, ON: Canadian Cancer Society; 2020. Available at: (accessed November 23, 2020).). In addition, many reports were produced by partners like Statistics Canada and the Canadian Partnership Against Cancer.

CanReg5 is an IARC-developed and supported software application specifically designed to capture and analyze cancer incidence data in cancer registries in lower- and middle-income countries worldwide.

CanReg5 is currently being utilized for data capture, data storage, and data analysis within cancer registries in several Caribbean countries. The IARC Caribbean Cancer Registry Hub (Caribbean Hub), which is based at the Caribbean Public Health Agency (CARPHA) in Trinidad and Tobago, provides technical support to cancer registries in the Caribbean for the customization, operationalization and use of CanReg5. Over the period 2017 to 2020, the Caribbean Hub has supported use of CanReg5 in eleven countries, namely, Antigua and Barbuda, Aruba, Bahamas, Barbados, Bermuda, British Virgin Islands, Cayman Islands, Curacao, Guyana, Jamaica, and Trinidad and Tobago.

Overall, CanReg5 has been an important tool for the operationalization and sustainability of cancer registries in the Caribbean. The software application is relatively easy to use, facilitates secure data storage, includes built-in data quality and duplicate checks, allows for routine data back-up, and enables useful and appropriate data analyses for reporting by cancer registries.

CanReg5 was originally designed to run via a server-client relationship on local networks. The traffic is over standard TCP/IP which allows users, in theory, to do remote registration through secure channels (SSH/VPN, etc.). This, however, has been difficult to implement in some Caribbean countries due to bandwidth and communication issues. This approach was tested in Jamaica, where a VPN software system was used to connect regional registries to a central server database. However, due to issues related to bandwidth, java policies and domain policies, even when connected through the VPN, there were errors connecting to the server from the client and with saving data.

Several Caribbean countries have expressed interest in using CanReg5 in a network, to facilitate reporting from remote sites to a central server. As a consequence, the Caribbean Hub is in the process of exploring alternate options which would allow for remote, secure data collection and upload into a central CanReg5 server.


Betsy Kohler
Executive Director
North American Association of Central Cancer Registries

Donna Turner
Provincial Director, Population Oncology
Cancer Care Manitoba
(Manitoba Cancer Registry)

Chuck Wiggins
New Mexico Tumor Registry




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