NAACCR 2022: New Orleans!

Dust off your suitcases – NAACCR is headed to New Orleans!

Join the NAACCR Community in New Orleans, Louisiana

Dates: Tuesday – Thursday June 20-22, 2023

Hotel: The Roosevelt New Orleans

Cost $199 standard rate

Watch the NAACCR listserv emails for Call for Abstracts information and other details about the conference. The NAACCR 2023 Conference webpage will be opening soon.

Registration will open in February 2023

 

If you have any questions, please contact the NAACCR Office. (217)698-0800

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Board of Director’s Resolution Honoring Dr. Melanie Williams

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Central cancer registries in Canada: strong integration with Canadian health information systems and a single standard setter.

NAACCR Editorial Review Board


Canadian perspective

As members of the Narrative editorial board, we have asked Dr. Jonathan Simkin to highlight how provincial and territorial cancer registries (PTCRs) in Canada operate from a data collection perspective to reporting on Canadian cancer surveillance trends. Jonathan resides in Vancouver, British Columbia, Canada, and is currently the Scientific Director of the BC Cancer Registry at BC Cancer, a program of the Provincial Health Services responsible for specialized cancer services across the cancer care continuum in the province of British Columbia. Additionally, he is the Co-Chair of the Canadian Council of Cancer Registries (CCCR), a collaboration between the 13 Canadian provinces and territories and the Centre for Population Health Data of Statistics Canada. Jonathan completed a Master of Public Health and PhD in Population and Public Health at the University of British Columbia (UBC) under supervision of Dr. Gina Ogilvie, a Tier 1 Canada Research Chair in Global Control of HPV related diseases and prevention. Jonathan’s thesis covered various spatial epidemiological methods to examine cancer incidence in British Columbia, Canada. Jonathan’s research interests are in geographic and social inequities in cancer, small area disease mapping, and novel approaches to cancer registry practice and data collection using natural language processing. The following description of Central Canadian cancer registries was provided by Jonathan and offers an informative summation of the Canadian process.

In 2021, there were 229,200 new cancer diagnoses estimated among Canadians (as reported by the Canadian Cancer Statistics Advisory Committee). The lifetime probability of developing cancer is 2 in 5 Canadians, while the lifetime probability of dying from cancer is 1 in 4. Additionally, cancer is the leading cause of death in Canada and was responsible for nearly 84,000 deaths in 2021. The most common cancers causing death are lung (24.8% of all cancer deaths), colorectal (11.3%), pancreas (6.6%), breast (6.5%) and prostate cancers (6.5%). Importantly, the cancer burden is projected to increase in Canada due to the aging and growth of the population but is also influenced by important changes in risk factors for cancer. Notably, nearly 4 in 10 cancers are attributed to preventable risk factors in Canada. Monitoring cancer incidence and mortality using cancer registry data enables identification of emerging patterns, evaluation of cancer prevention efforts over time, and development of public health policy that is specific for Canadian needs.

 

Provincial and Territorial Cancer Registries

Canadian cancer surveillance consists of 13 provincial and territorial population-based cancer registries that collect information on all reportable tumours among Canadian residents along with patient demographic and geographic data. Each PTCR is responsible for collecting data among residents of their province or territory, as well as maintain data quality and completeness of records according to Canadian and international coding standards. Although PTCR practice may differ across the provinces, most of the information collected is ascertained from provincial/territorial level health information systems attributed to universal health care systems in Canada. For example, the BC Cancer Registry is integrated with the provincial lab information system and receives all cancer pathology reports electronically in near real time. Additionally, BC leverages the US CDC’s Electronic Mapping, Reporting, and Coding (eMaRC) Plus software for processing and computer-assisted coding.

Provincial and Territorial cancer registries report new primary cancer diagnoses to Statistics Canada following the SEER reporting rules, through annual submissions, which are integrated into the national Canadian Cancer Registry (CCR) database. The CCR is a dynamic database of all primary cancer cases diagnosed among Canadian residents since 1992. The data submitted by the PTCRs to Statistics Canada describe both the individual with the cancer, and the characteristics of the cancer. Similar to other national-level databases, the CCR contains information about the type and number of primary cancers diagnosed for each person. This person-oriented database has the advantage of being able to provide longitudinal data for each cancer patient such that a single person record exists for all tumors diagnosed during that person’s lifetime in any area within Canada. This single person record is assured through a yearly duplicate resolution process led by Statistics Canada where possible duplicate records are reported back to the PTCRs for resolution of ownership.

The CCR and its reporting guidelines are governed by the Canadian Council of Cancer Registries, which includes representation from all provincial and territorial cancer registries and the Centre for Population Health Data at Statistics Canada. This governance and surveillance model, with a single standard setter, ensures the collection of standardized and comparable data across all PTCRs, and enables reporting on measures of the cancer burden at the national level to support health planning and decision making. Having a single standard setter within Canada, in many respects, simplifies the amount of work and infrastructure needed for national-level reporting.

Most provinces voluntarily submit data annually to NAACCR for certification as an additional level of assuredness of completeness, quality, and timeliness. This Canadian data is included in North American-level surveillance in CiNA. Canadian cancer registries value their connection with NAACCR. Both our members and members of Statistics Canada serve on many steering committees, task forces, and working groups as well as pursue NAACCR board positions. The Canadian Council of Cancer Registries looks to NAACCR for information on the adoption of new standards. Additionally, Canadian registries rely on NAACCR for registrar training sessions.

 

Benefits to CCR being in the Statistics Canada environment

Statistics Canada is Canada’s national statistical agency reporting to the Federal Government. Its legal mandate covers the development of the whole breadth of socio-economic statistics including both the Censuses of Population and Agriculture, Economic Statistics which cover everything from production to retail sales and services alongside the price indices, to areas including population, labour, justice, and health data on the social side. This national statistical model supports a critical mass of expertise and infrastructure for data collection, processing and statistics augmented by subject matter experts.

Given that the CCR sits within the Statistics Canada environment, there are significant opportunities to explore important population oncology questions through data linkage with various national surveys and population-based datasets, including Vital Statistics, Census of Population, Tax and income records, Health Surveys and direct health measure programs operated by the Agency including the Canadian Health Measures Survey. The Statistics Canada Population Health Data Division leads several efforts to measure the burden of cancer across sociodemographic and economic indicators to support the development of evidence-based public health policy and programs. Additionally, the Agency facilitates access across the country to Statistics Canada datasets and data linkages for academic and surveillance communities via a secure environment.

Population-based cancer registries provide a foundation of information to support monitoring trends, evaluating cancer prevention programs, and guiding healthy public policy towards reducing the burden of cancer. Canadian cancer registry leads continue to work with partners across the health care systems within Canada to improve the quality and efficiency of data collection, while expanding the ability of the cancer surveillance experts across the country. Integration with health information systems that are structured within a universal health care system and having a single standard setter streamlines the process for the PTCRs. The cancer registries in Canada work closely together to advance training, education, and innovations in registry practice across Canada. Additionally, the Registries work with knowledgeable surveillance and data experts within Statistics Canada to optimize the process of cancer surveillance reporting and facilitate access to data across Statistics Canada datasets for important population oncology research.

 

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College of American Pathologists (CAP) Pathology Electronic Reporting (PERT) Committee Update

Mignon Dryden, CTR
NAACCR Liaison to PERT

 

A CAP electronic Cancer Checklists (CAP eCC) release is now available. This 3rd Quarter release includes content and metadata changes to 10 templates.

Highlights of content changes in this release include:

  • NEW Protocol – Protocol for the Examination of Tumors of the Brain and Spinal Cord (v.1.0.0.0), which combines Integrated Diagnosis and Histological Assessment
  • No changes to this release that affect accreditation dates
  • Other key content changes include:
    1.  The Expert Consultation question was made optional, and an explanatory note was added in the Rhabdomyosarcoma and Ewing Sarcoma Biopsy and Resection templates
    2.  Added Other (specify) and Cannot Be Determined (explain) answer options to the Margin Status question in the Breast Phyllodes template
    3.  Updated the reporting note under Pathologic Stage Classification in the Lung Resection template

The Protocol for the Examination of Specimens from Patients with Tumors of the Central Nervous System (v.4.0.0.0), which includes three separate templates, has been retired with this release.

Please refer to the CAP eCC Table of Changes and the Protocol and Template Version Table (Sept 2022) files which may be found in the Documentation and Other Resources folder of the release package for the full list of templates and changes in this release.

ICD-O-3 AND SNOMED CT MAPPING

Updated ICD-O-3 mapping codes are provided for Histologic Type and Tumor Site.

XML COMPARATOR

This release includes an updated CAP eCC XML Comparator which is a web-based tool for comparing CAP eCC XML files. The new XML files have been uploaded in this tool and users can compare the changes to previously released XML files.

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Transitioning the Annotated Histology List to the Cancer PathCHART Initiative

Richard Moldwin, M.D., Ph.D.
Lead Physician Informaticist
College of American Pathologists

Michelle Esterly, RHIA, CTR
Katmai Government Services
Contractor to the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control, National Program of Cancer Registries (NPCR)

 

The Annotated List (AL) Project with Cancer PathCHART (CPC)

Cancer PathCHART (CPC) is a muti-organizational project, involving eleven North American and global organizations, including NAACCR, that validates and converts data standards from many cancer registry sources into a centrally-accessible database. An internet portal provides access to the database. The NAACCR Annotated List (AL) contains a large amount of standardized information for reporting and histology coding and is used to power registry software. The AL-CPC project team is converting the AL to a more computer-readable format for use in CPC.

History of the Current Annotated Histology List

The AL has been posted on the NAACCR website and is primarily used as a resource to the cancer registry community. The intent of the AL is to: (1) help registry software vendors use picklists or quality control of existing picklists for ICD-O-3 histologies and (2) provide helpful annotations to cancer registrars for use in abstracting and coding validation. This file has been maintained by the Registry Plus team at CDC’s NPCR for several years and reflects modifications to ICD-O-3 implemented by North American cancer registries over time.

The AL is comprehensive and includes codes that were replaced or made obsolete over time. One histologic term is flagged as the preferred term, and synonyms and related terms are incorporated. Multiple entries with permutations of words are listed multiple times with different word order to account for variations specified in medical documentation.

Data sources include ICD-O-3.2, NAACCR ICD-O-3 Implementation Guidelines and documentation, and WHO Classification of Tumours (Who Blue Books). The AL is updated for each NAACCR version based on content changes identified in recently published WHO Blue Books and approved by the NAACCR ICD-O-3 Workgroup.

Current Activities

The AL has been used for the CPC Annotated List. Work is underway to harmonize and integrate the information into a standardized relational database of tumor histology terminology to serve all standard-setting organizations throughout the cancer registry community.

The following tasks are being performed:

  • Validating content against original NAACCR, NPCR, WHO, and SEER source material.
  • Developing connections with other CPC database tables to standardize new and historical registry data.
  • Merging AL-CPC-derived database tables into a common and compatible CPC format.
  • Transforming AL data into highly specific new data columns that precisely reflect the varied kinds of information in the AL annotations. Examples include: columns for reporting start/stop dates, term types (e.g., new synonyms and related terms for existing codes), and code/behavior reclassification.
  • Reviewing synonyms and validating terms with appropriate resources such as the ICDO-3.2 list, and new entries derived from the WHO Blue Books.

Future Plans

The target initial implementation for the first group of CPC products for the NAACCR community is January 2024.

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NAACCR President’s Message


Win
ny Roshala, BA, CTR
NAACCR President
[email protected]

 

 

Hi everyone and welcome to the Autumn season! I hope you had an opportunity to make some fond memories this summer, spending time with loved ones and perhaps even taking a long-awaited vacation! We’ve all learned the importance of self-care during the pandemic, so please make time for yourselves as we transition into the challenging waters of the data submission process. Please ensure you have reviewed the NAACCR Call for Data letter, as well as the Call for Data Instructional webinar with slides, covering the new requirements for the 2022 Call for Data. These resources can be found on the NAACCR website.

As you are aware, the 2020 data submission includes data during the beginning of the COVID-19 pandemic. We know the pandemic impacted cancer case counts. NAACCR has been working with the other standard setting agencies to come up with 2020 case estimates as a result of the pandemic impact. While there may be incidence variances, there has definitely been an overall decrease in the incidence numbers. While the preliminary incidence rates for 2021 cases seem to be on the increase over 2020 incidence rates, it may take some time to fully assess the impact of the pandemic on cancer incidence and survival. In addition, the question of publishing 2020 data has also been the topic of discussion. Diagnosis year 2020 presents challenges in both creating adjusted estimates and data analysis. It is a unique and challenging year for the cancer surveillance community, but one that is being carefully and cautiously discussed.

As another result of the pandemic, many previously in-person held educational offerings have been held virtually, allowing more people to attend. This has been an unexpected positive impact of the pandemic, to further educate and enrich our professional knowledge and networking opportunities!

Just a reminder that NAACCR offers a variety of educational opportunities for all members of the cancer surveillance community, such as the NAACCR Webinar Series, NAACCR Talks, and NAACCR CTR Exam Preparation and Review Webinar Series. Upcoming educational events include: What’s Up in Canada, Eh? Focus on Canadian Cancer Surveillance Research, scheduled for November 7, 2022, and V23 Update: ICD-O, Solid Tumor Rules, SSDI, scheduled for December 15, 2022. More information and registration links can be found on the NAACCR website.

Registry Operations Guidelines are also available on the NAACCR website, including Strategies for Data Quality Beyond Edits, NAACCR Tip Sheets based on input from central registries who participated in the NAACCR Registry Operations Workshop series, a Telecommuting Best Practice document and many more resources. Check it out!

What’s coming up? Stay tuned as a newly revised Death Clearance Manual, effective January 1, 2023, for Deaths Occurring in 2022. We hope the revised document will be an excellent resource for central registries! A huge thank you to Bobbi Jo Matt, Chair, and the Death Clearance Task Force members for this vital resource!

The NAACCR Board has been working diligently to identify the NAACCR key component strategic priorities to ensure a foundation for the future of cancer surveillance. So much work to be done, with the ever-present challenge of limited funding and resources. We remain committed to the process and undaunted by the challenges! Stay tuned for more information regarding the Strategic Management Plan as we work through this process.

Wishing everyone a safe, wonderful, and beautiful Autumn season!

Please contact me should you have any questions, comments or suggestions at [email protected]

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Spotlight on Registries: Lymona Refugia, CTR, Guam Cancer Registry

NEW FEATURE! Spotlight on Registries

The NAACCR Narrative Editorial Board is introducing a new feature to the Narrative Newsletter. Spotlight on Registries will be a series of articles that highlights a registry’s special activities or achievements. This Edition spotlights the U.S. Affiliated Pacific Island (USAPI) Jurisdictions 2021 NPCR Success Story, describing their successful implementation of FLccSC (Fundamental Learning Collaborative for the Cancer Surveillance Community). Lymona Refugia, CTR, from the Guam Cancer Registry and lead-author on the Success Story spoke with the Narrative recently about their experience.

To see the original 2021 NPCR Success Story, click here.

 

NAACCR Narrative Interviews Lymona Refugia, CTR, Guam Cancer Registry

NAACCR Narrative (NN): You detailed a lot of challenges that the USAPI face compared to typical NPCR registries. What do you think was your greatest challenge in implementing your own FLccSC training website and rapid-reaction Zoom calls?

Ms. Refugia: One of the greatest challenges to implementing our FLccSC was actually just accessing the site. Because we are not physically within the 50 states, accessing the FLssSC site requires us to use a VPN. This in itself is not really an issue, however, when you tie that into the sometimes really slow connection speed within the other jurisdictions, it can be frustrating. We are all learning together how best to utilize FLccSC and I think it will become a great tool not just for our jurisdictions but everyone as well.

With the rapid reaction Zoom calls our greatest challenge is timing. With our jurisdictions spanning 6 different time zones, it can sometimes be hard to find a time that will work for everyone. Another issue that is thankfully less and less relevant is bandwidth. Many of our jurisdiction registrars weren’t able to join Zoom calls with both video and audio on. This has gotten better on the one hand, with the software upgrades on the Zoom platform’s side (lower bandwidth is needed for audio/video), and on the other, islands are able to secure better internet access for their Healthcare/Public Health offices, but there is still room to grow. Jurisdictions can’t dial into Zoom calls because even the 1-800 numbers act as international calls (and callers are charged $$$ for such calls).

NN: What do you think was your greatest success in this implementation?

Ms. Rufugia: Our greatest success with the implementation of FLccSC is something that we actually just launched. We put together an introductory cancer registry crash course, which includes basic registry operations, simple anatomy, basic Excel and what to expect as a registrar. As we are limited in resources, our jurisdictions don’t have the strict requirements that facilities in the US have. We are normally limited in finding individuals who are interested in registry operations (or advanced data entry type of work). With the crash course, we have already had success in having potential registrars learn more about the field and express their interest in joining our registry teams. Aside from the initial connection issues, it seems the response to the site has been positive and it is easy to use.

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Request a Resolution

Go to list of Board Resolutions on website: https://www.naaccr.org/board-resolutions/

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Save the Date!

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Fall 2022 Education and Training Calendar


Angela Martin, CTR
NAACCR Trainer/Project Coordinator
[email protected]

 

 

Upcoming Webinar Presentations

Nov 2022
11/03/2022NAACCR Webinar Series: Breast 2022 Part 2
11/10/2022What’s up in Canada, Eh? Focus on Canadian Cancer Surveillance Research
Dec 2022
12/01/2022NAACCR Webinar Series: Esophagus 2022
12/15/2022V23 Update: ICD-O, Solid Tumor Rules, SSDI
Jan 2023
01/12/2023NAACCR Webinar Series: Head and Neck 2023

 

For more information about NAACCR education and training opportunities, or to register online, go to the Education and Training site https://education.naaccr.org/upcomingevents or contact Angela Martin ([email protected]).

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