Public Policy and Strategy

NCRA’s Public Policy and Strategy Consultant: Adam Ebbin

Counting Veterans' Cancer Act Passes U.S. Senate

A long-standing legislative priority of NCRA, the Counting Veterans' Cancer Act of 2023, passed the United States Senate on November 1, 2023.

The bipartisan bill, was sponsored by Senator Mark Kelly (D-AZ) and Senator Thom Tillis (R-NC) in the form of an amendment to the Veterans Affairs Appropriations bill, HR 4366--the Military Construction, Veterans Affairs, and Related Agencies Appropriations Act. 

The Counting Veterans’ Cancer Act of 2023 seeks to improve veterans care by requiring all data on veterans diagnosed with cancer to be reported by the Department of Veterans Affairs to central cancer registries, which will allow for identifying and improving cancer-related needs of veterans, and increasing opportunities for veterans with cancer to be included in clinical trials, cancer-related research, and analysis

NCRA's advocacy work for this bill included meetings with Senate offices to identify potential Republican co-sponsors during April 2022's Walk on the Hill, 11 zoom meetings in September of this year with offices of members of the Senate Veterans affairs committee, including the Chairman, Senator John Tester (D-MT), as well as facilitating hundreds of emails from NCRA members in 42 states in support of the bill. Thanks to the hundreds of dedicated NCRA members whose persistence got us to this point!

The next step is for a House-Senate conference committee to consider our amendment to H.R. 4366, along with other amendments adopted by the Senate. If the conference committee agrees to accept the Counting Veterans' Cancer Act language, it would still require another vote in both the Senate and House to accept the final bill's wording and send it to President Biden for his signature.

In the meantime, NCRA is working with Senator Kelly's office to seek bipartisan support in the House of Representatives for a House version of the original bill in case our amendment and the final version of HR 4366 does not advance. Though this is a long process, it is not a unique one. It is not unusual for bills to advance as amendments to appropriations acts, particularly when organizations build support through bipartisan grassroots efforts like NCRA's advocacy campaign.

Stay up to date with all NCRA advocacy activities at www.ncra-usa.org/advocacy.

American Joint Committee on Cancer (AJCC)

NCRA’s AJCC Liaison: Vonetta L. Williams, PhD, MPH, CTR

News from AJCC! 

As announced in the Nov. 30, 2023 ACS Cancer Programs Newsletter (AJCC Announces Version 9 Protocols and AJCC Staging Online | ACS facs.org), the American Joint Committee on Cancer (AJCC) has released the latest Version 9 AJCC Cancer Staging Protocols and has an upcoming launch of AJCC Staging Online. 



Version 9 of the AJCC Cancer Staging Protocols represents a significant advancement in the field, offering critical updates and refinements to enhance the precision of cancer diagnosis and treatment planning. These protocols are now available for purchase on Amazon.com.

AJCC Staging Online, the new comprehensive subscription service scheduled to launch in the first quarter of 2024, will provide oncologists and cancer registrars unparalleled access to the most current Version 9 Cancer Staging Protocols and 8th Edition Cancer Staging Manual content.

For more information, visit the AJCC website.

National Accreditation Program for Breast Centers (NAPBC)

NCRA’s NAPBC Liaison: Penne J. Perry, RHIT, CTR

The NAPBC revised 2024 accreditation standards, Optimal Resources for Breast Care (2024 Standards) will be released and available to programs in early December 2023. Be sure to check out the NABPC website where you will find the revised standards along with resources and information supporting the revised standards including:

• Changelog documenting standards revisions since the official launch in February 2023
• NAPBC 2024 Standards: Frequently Asked Questions

All NAPBC-accredited programs will be expected to begin documenting compliance with these new standards starting January 1, 2024. Questions regarding the 2024 standards should be submitted through the ACS CAnswer Forum.

NCDB Special Studies Group

NCRA’s CoC Special Studies Group Liaison: Vicki Hawhee, M.Ed., CTR

The NCDB Special Studies Group continues to meet monthly and reviews proposals for modified PUF files, R01 grant data requests and Special Studies from a variety of investigators. The NCDB Special Studies Group reviewed six requests for modified research files since January 1st, in addition to reviewing an R01 grant submission that will make use of NCDB data. Of those requests, all but two were approved by Steering to move forward. The newest member of the Group is renowned surgical oncologist, researcher, leader, and strategist Ronald J. Weigel, MD, PhD, MBA, FACS, who is the new Medical Director for ACS Cancer Programs and succeeds Heidi Nelson, MD, FACS, who retired in August after serving admirably for 5 years in that position.

College of American Pathologists (CAP)

NCRA’s CAP Liaison: Mildred Jones, CTR

Over the course of the past few months, there have been several changes. As part of the ongoing efforts to strengthen the relationship between College of American Pathologists (CAP) and NCRA, a second podcast installment, “A Deeper Dive into Cancer Registries”, was released in mid-July. This session furthered the discussion on how cancer care is improved by the use of cancer protocols and detailed the importance of the downstream utilization of cancer registry data. This podcast featured Peggy Adamo, public health analyst with NCI SEER; Andrea Sipin-Baliwas, Director of Registry Operations at LA County Surveillance Program; and Dr. Lara Harik, Medical Director for Clinical Director Service Line at Emory University. With nearly 500 listens, this College of American Pathologists CAPcast provided another avenue for pathologists to better understand the critical role cancer registrars play in cancer surveillance. This podcast can be found at this link: A Deeper Dive into Cancer Registries by CAPcasts from the College of American Pathologists podcast.

CAP hosted an inaugural meeting, The Future of Cancer Data: Unlocking Insights with Pathology Reporting”, on October 6th. This one-day summit reviewed how the untapped potential of cancer pathology data can improve outcomes for cancer patients. With approximately 70 attendees, audience members included pathologists, oncology leaders, informatics representatives, CTRs, and others. Janet Reynolds represented NCRA at this summit. We are excited for the opportunity to participate in future meetings. 

The CAP Cancer Committee convened on October 9th, and I presented an overview of the CoC Forum, Ask The Pathologist (ATP). Several members were unaware of this forum as a path for cancer registrars to submit questions. A CAP Cancer Committee workgroup is being formed to recommend and implement improvements to the existing ATP Forum. 

In September, the CAP released several changes in the cancer protocols, especially with the hematology and pediatric malignancies. A new protocol, Precursor and Mature Lymphoid Malignancies, replaced the Hodgkin and Non-Hodgkin Lymphoma Protocols. The Myeloid and Mixed/Ambiguous Lineage Neoplasms replaced the retired Bone Marrow protocol, and Plasma Cell Malignancies replaced Plasma Cell Neoplasm. Twelve pediatric protocols were updated based on WHO guidelines, and these protocols will be required for accreditation by CAP. Other changes include thirteen GU protocols updated based on WHO guidelines and anus local excision revised based on AJCC version 9 staging. For a complete list of changes, please see 2023-September-Cancer-Protocol-Summary-of-Changes.pdf. 

The 4th quarter release for Cancer Protocols will include substantial changes also. The Melanoma Biopsy and Melanoma Excision will be retired, but replaced by new Melanoma Biopsy and Melanoma Resection. The in situ components are being removed from each. There will also be New Autopsy and Autopsy CNS template. Fourteen protocols are being revised, including six GI NET, which had major WHO and AJCC version 9 updates. Specifically this impacts stomach, pancreas, appendix, jejunum and ileum, duodenum and ampulla, colon and rectum protocols. The vulva protocol is also being updated to reflect AJCC version 9 updates and endometrium now reflects FIGO update. There will not be any releases in the first quarter of 2024, but releases will resume in the 2nd quarter of 2024. I would encourage registrars to review all changes at Cancer Protocol Templates | College of American Pathologists (cap.org).

Cancer PathCHART

NCRA’s Cancer PathCHART Liaison: Janet Reynolds, BA, CTR 

The Cancer PathCHART collaborative continues efforts to produce an integrated, relational database that links histology terminology with tumor topography, morphology, behavior and histologic grade codes and descriptions across versions of the WHO Classifications of Tumors, ICD-O, CAP cancer protocols and checklists, AJCC, SNOMED and ICD-10 CM. The program remains on track to provide the initial “products” by 2024, which include tables showing all current and historical histology codes and terms and their compatibility with specific sites, assessing combinations of site and histology as possible, not likely/rare or impossible. These will be available to the software companies to map into the Cancer Registry applications and trigger edits. A web-based tool to search 2024 standards, including unlikely combinations, ICD-O-3.2 preferred terms and all associated WHO terms is planned prior to 1/1/24. 

Collaborating standard setters in Cancer PathCHART will review their products for changes in the validity of any tumor site-morphology combinations designated through the Cancer PathCHART expert pathologist and registrar review process. The Cancer PathCHART Team and Lois Dickie, lead author on the Solid Tumor Rules, are reviewing the rules to detect rules including site-morphology combinations that are impossible per the Cancer PathCHART review process. 

Denise Harrison and Mildred Jones joined the cancer registry education committee of the Implementation Workgroup and drafted an education plan. Dr. Alison Van Dyke, Co-Chair of the Core Management Team, and Jim Hofferkamp, Co-Chair of the Implementation Workgroup, recorded an educational presentation outlining the Cancer PathCHART initiative and its impact on edits. The recording was offered to state associations for presentation at their annual meetings, and has been presented along with live Q&A with members of the cancer registry education committee. We hope to provide additional education as the project moves into full implementation.

Additional information:

Cancer PathCHART website is located at https://seer.cancer.gov/cancerpathchart/ with a FAQ page at https://seer.cancer.gov/cancerpathchart/faqs.html. Current technical questions should be directed to NCICancerPathCHART@mail.nih.gov. After January 1, 2024, technical questions will be able to be submitted via a Q&A form on the Cancer PathCHART website (not currently available). Coding questions for cases diagnosed January 1, 2024 and forward should be directed to Ask-A-SEER Registrar or SINQ.

Cancer Surgery Standards Program (CSSP)

NCRA’s CSSP Liaison: Nadine Walker, MS, CTR

The Cancer Surgery Standards Program (CSSP) is dedicated to improving the quality of care for cancer surgery patients. The CSSP achieves better quality patient care by educating surgeons on the technical conduct of oncologic surgery and setting standards for surgical care. They aim to standardize operative documentation to accurately reflect oncology-critical standards by developing protocols for cancer surgery.

The mission of the American College of Surgeons Cancer Surgery Standards Program (CSSP) is to define cancer surgery standards so institutions and surgeons can readily adopt and easily integrate cancer surgery standards into the accreditation process. The CSSP brings together experts in cancer surgery and accreditation to develop standards for surgical care, disseminate resources and tools that support implementation and adherence to standards, and educate and train surgeons, trainees, and staff at accredited programs, and accreditation site reviewers. The CSSP also develops disease-specific cancer surgery protocols, which provide guidance on the collection of essential data for cancer surgery.

Member organizations participating in the CSSP have an opportunity to be involved in quality improvement activities of the ACS and collaborate with other members from organizations around the country. Member organization representatives will be instrumental in the creation of infrastructure geared towards CoC accreditation, educational resources, and strategies for implementation of synoptic operative reports.

The NCRA Board of Directors recently appointed a new CSSP liaison for a three-year term, Kimberly Rodriguez, BSPH, CPH, RHIT, CTR. Kim began her 3-year term as the new NCRA liaison to the CSSP in October 2023. We look forward to the continued collaboration between NCRA and the CSSP.

CSSP Member Organizations

Society of Surgical Oncology (SSO)

College of American Pathologists (CAP)

American Urological Association (AUA)

The Americas Hepto-Pancreato-Biliary Association (AHPBA)

The American Association of Endocrine Surgeons (AAES)

Society of Thoracic Surgeons (STS)

Society for Surgery of the Alimentary Tract (SSAT)

American Society of Colon and Rectal Surgeons (ASCRS)

The American Society of Breast Surgeons (ASBrS)

National Cancer Registrars Association (NCRA)

Source: Cancer Surgery Standards Program | ACS (facs.org)

High-Level Strategic Group (HLSG)/Mid-Level Tactical Group (MLTG)

NCRA’s HLSG Representative: Karen Mason, MSc, RN, CTR

NCRA’s MLTG Representative: Jennie Jones, MSHI-HA, CHDA, CTR

The purpose of the HLSG and MLTG is to ensure high-level coordination among all cancer surveillance organizations regarding the development and implementation of significant changes in cancer data collection standards and procedures. 

The MLTG and HLSG ensure collaboration amongst standard-setters to closely monitor and review release and completion dates for the NAACCR Standards Volumes implementation and other standard setters’ updates. It is critical to have registrar representation in these discussions and NCRA has a representative in both the MLTG and the HLSG. This collaboration helps to ensure harmonization with updates and changes via a systematic process to ensure that they are implemented in a timely fashion. The MLTG has developed a new pilot process for efficient and effective field-testing process to help inform the group when evaluating new and revised data items. The MLTG has already begun working toward v25 for seamless implementation. 

Stephanie Hill, MPH, CTR, Associate Director of NAACCR, authored a compelling article describing the change request process and sharing an excellent summary of v24 changes. Please follow this link to read the full article, ‘Mid-Level Tactical Group Reviews Change Requests to Data Standards’: https://narrative.naaccr.org/mltg-v24_changes/.

Thank you to the cancer surveillance organizations for your continued tireless efforts to adhere to important timeframes and in keeping the community updated to ensure the continued capture of high-quality data. Many thanks to all the diligent cancer registrars for your continued efforts in keeping up with changes and clarifications. We are all working toward a common goal of capturing high-quality data for utilization as the cornerstone of crucial efforts in reducing the burden of cancer.

Special thanks to Stephanie Hill at NAACCR for the v24 Summary of Changes and all the members of the HLSG and MLTG. 

Technical Advisory Group (TAG)

NCRA’s TAG Liaison: Susanna Mitchell, BS, CTR

As your new liaison to the Technical Advisory Group (TAG), I wanted to restate information about this important group and NCRA’s historical involvement with TAG. 

The TAG is a group of individuals who represent the various standard setters within the cancer surveillance community. The focus of the group is to reconcile discrepancies in reporting or coding rules between standard-setters. The group is comprised of representatives from CoC, NCI-SEER, CDC-NPCR, CCR (Canadian Cancer Registries), NAACCR, and NCRA. NCRA has had a TAG liaison since 2014, and I was just appointed to serve in this role in October 2023. The group meets via Zoom monthly to address questions and seek solutions to issues that are brought forward, some of which include coding clarifications or data collection discrepancies. 

NCRA’s involvement with TAG serves as a linkage for registrars to be aware of and involved in critical data collection decisions that impact the cancer registry community. My goal is to provide an abstractor’s perspective and help provide context on how we interpret the various rules and guidelines.