Kasey Diebold
Health Informatician
Centers for Disease Control and Prevention

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is designed to advance understanding and care of cancer diagnosed in children and young adults. Through its enactment in 2018, CDC was charged to improve reporting of new cases of cancer diagnosed among children, adolescents, and young adults from birth to 29 years old. The STAR Act empowers CDC to improve early identification, rapid reporting, and epidemiologic monitoring of childhood cancer.

CDC’s STAR project recruits and trains laboratories, hospitals, and health information exchanges to electronically report newly diagnosed cancer in children to central cancer registries. CDC’s Early Case Capture project showed that reporting new cases of childhood cancer to central cancer registries within 30 days was possible. A scalable infrastructure was required to expand electronic reporting to all registries. CDC’s National Program for Cancer Registries (NPCR) built a system called the NPCR National Oncology rapid Ascertainment Hub (NPCR-NOAH) to improve childhood cancer reporting. Consistent with data modernization efforts at CDC, NPCR-NOAH is a cloud-based informatics system designed to improve case finding and timeliness of reporting of childhood cancer cases to registries. Coupled with CDC’s Cancer Surveillance Cloud-based Computing Platform, NPCR-NOAH can enable cancer registries to collect, edit, and store childhood cancer data more efficiently.

The STAR Project is part of the CDC’s Bigger Picture for Data Modernization.

In 2019, CDC launched the Data Modernization Initiative (DMI) to modernize data and surveillance infrastructures at the federal and state levels. The DMI is a major effort across the agency that affects the broader public health landscape, including cancer surveillance. The goal is to make current surveillance infrastructures sustainable, connected, and adaptable. These updates will allow systems to share information faster so public health professionals can respond to public health threats more effectively.

The STAR Project is an integral part of the DMI, and the NPCR-NOAH system will make it possible to improve enrollment in childhood cancer trials, connect patients to resources faster, improve patient outcomes, and reduce the overall burden of cancer on patients and their families. CDC is working with select central cancer registries on the STAR Project, including pilot-testing NPCR-NOAH. The successes and lessons learned will help inform CDC’s data modernization efforts.

Learn more about the STAR Project.

Heather Stabinsky
NAACCR Nominating Committee

Call for Nominations for the 2024-2025 NAACCR Board of Directors and 2024-2025 Nominating Committee are coming! The NAACCR Nominating Committee will be seeking nominees for election to the leadership roles of President Elect and three (3) Representative at Large on the NAACCR Board of Directors and to the Nominating Committee. Stay tuned for more information and your chance to nominate yourself or a colleague. Think about the impact you can make.

Calling All Mentors! Calling All Mentors!  NAACCR needs YOU!

The NAACCR Mentorship Program is a peer-to-peer program that connects members to strengthen professional skills, knowledge, and professional development. (Click her for more information) Since our launch in June we have been busy matching mentors and mentees. Over the weeks of meeting and matching, we have discovered something: WE NEED MORE MENTORS!!

We are looking for Mentors in the following areas:

• Directors and Senior Managers
• Education and Training Subject Mater Experts.

As a mentor, you would be paired with one or more individuals, if you choose, and you can discuss when to meet. We have some current mentors that meet once a week, once a month or just once.  It is whatever works best for the schedule of you and your mentee.

You can fill out the form here: https://survey.alchemer.com/s3/7243818/Mentor-Mentee-Form

Stephanie M. Hill, MPH, CTR
NAACCR
[email protected]

The Mid-Level Tactical Group (MLTG) is a collaborative body of cancer registry standard setters, led by representatives from CDC NPCR and NCI SEER and coordinated by NAACCR. Other member organizations include the Commission on Cancer (CoC), American Joint Committee on Cancer (AJCC), College of American Pathologists (CAP), the Canadian Council on Cancer Registries (CCCR) and the National Cancer Registrars Association (NCRA). The primary purpose of the MLTG is to review requests for changes to the common NAACCR Data Standards and Data Dictionary (DS&DD). The NAACCR DS&DD includes most of the data items collected by hospital and central registries, although individual standard setters may choose to collect data items outside the NAACCR DS&DD.

The MLTG considers many factors when reviewing change requests, including scientific and clinical rationale, burden on registrars, availability of information in the medical record, technical feasibility, and field test results. Based on their review and with input from the Uniform Data Standards Work Group, the MLTG makes recommendations to the High-Level Strategic Group (HLSG), who has the ultimate authority to decide implementation.

Between June and October 2022, the MLTG received and reviewed 55 change requests for implementation in 2024: 28 requests for new data items and 26 requests for revisions to existing data items. After careful consideration and deliberation, including a special in-person session, the HLSG approved 23 of the proposed changes for implementation in 2024. The approved changes included six new data items (three derived and three manually coded), 12 revisions to existing data items, and retirement of five data items.

Summary of v24 Changes

New Data Items

• Rx Hosp–Recon Breast [751] & RX Summ–Recon Breast [1335]
• Brain Primary Tumor Location [3964]
• Derived Summary Grade 2018 [1975] (derived at central registry)
• Geocoding Quality Code [86] (derived at central registry)
• Geocoding Quality Code Detail [87] (derived at central registry)

Revised Data Items

• IHS PRCDA [194] – minor wording changes
• UHIO [284] – name change and minor wording changes
• UHIO City [285] – name change and minor wording changes
• Tobacco use smoking status [344] – minor wording changes
• EDP MDE Link Date [530] – minor wording changes
• EDP MDE Link [531] – minor wording changes
• RX Hosp-Surg Prim Site 2023 [671] & RX Summ-Surg Prim Site 2023 [1291] – new surgery codes for breast, colon, lung, pancreas, and thyroid
• SSDI Brain Molecular Markers [3816] – added codes and terminology
• P16 [#3956] – added vulva schema to SSDI
• Location of Radiation [15550] – minor wording changes
• SEER SSF#1 [#3700] – changed to 2 digits and added codes

Retired Data Items

• Birthplace [#250]
• Place of Death [#1940]
• CRC Checksum [#2081]
• Maiden Name [#2390]
• LN Status Femoral-Inguinal, Para-aortic, Pelvic [#3884]

More information on the changes approved for v24 implementation can be found in the NAACCR Implementation Guidelines.

An overview of the MLTG Change Control and Implementation Process can be found at Illustrated-Change-Management-Process.pdf.

Mignon Dryden, CTR
NAACCR Liaison to CAP PERT

A CAP PERT meeting was held virtually as well as in-person in Salt Lake City, UT on Sunday, July 9 and Monday, July 10, 2023. Highlights of this meeting included:

• 2023 Protocol Release and Mapping Updates – Quarter 3 Release is scheduled for September 20 and will include 34 protocols including three NEW Hematopoietic (Lymphoid Precursor, Bone Marrow, and Plasma Cell) protocols; and updates or corrections to 12 Pediatrics, 15 Genitourinary, Lung biomarker, IHC biomarker, and Anal Excision protocols; and a NEW Anogenital Cytopathology protocol. The four existing hematology cancer protocols will be retired: Bone Marrow, Hodgkin Lymphoma, Non-Hodgkin Lymphoma and Plasma Cell.

Quarter 4 Release is scheduled for December 13 and will cover at least 14 protocols including NEW Autopsy, NEW Endocrine (Pituitary Neuroendocrine which will be required for accreditation), and a NEW Melanoma. In addition, AJCC updates to Vulva and the six GI NET protocols will occur, and the six GI NETs will also be updated to WHO 5^th Edition.

2024 Releases – Will include: NEW Conjunctival Melanoma, NEW Parathyroid, NEW Paraganglioma and Pheochromocytoma, and NEW Bone protocols. Release dates are scheduled for:

Quarter 1: March 20, 2024
Quarter 2: June 19, 2024
Quarter 3: September 18, 2024
Quarter 4: December 11, 2024

Other updates and all the CAP Cancer Protocols can be found on the CAP Website: Cancer Protocol Templates | College of American Pathologists (cap.org).

• eCP to SNOMED Mapping Project – Dr. Scott Campbell, University of Nebraska, provided an update on this project and asked the committee for feedback on questions to date. An incredible amount of work has been completed and is awaiting corrections and minor additions identified by CAP. Future work such as expansion into biopsy and other protocols, distribution of content, maintenance and revision cycle, training, etc. was also discussed.
• Cancer Data Summit – new name but same concept for what was previously User Group meetings. This year’s summit, “The Future of Cancer Data: Unlocking Insights with Pathology Reporting” will be held in Chicago on October 6. Goals of the meeting are to explore and identify opportunities to shape the future of pathology data use, discuss how quality improvement programs benefit from standardized use of synoptic reporting within and across laboratories, and how public health initiatives benefit from utilizing pathology reporting.
• CAP Podcasts – also called CAPcasts have three sessions of interest specific to the cancer registry community. Released in May with collaboration from NCRA, the first one featured Dr. Lara Harik, the Vice Chair of the CAP Cancer Committee and Mildred Jones, CTR, NCRA Liaison to the CAP Cancer Committee discussing the basics of cancer registry from a hospital perspective. The second podcast released in July features Peggy Adamo, BA, CTR of NCI/SEER and Andrea Sipin-Baliwas, MS, CTR of the Los Angeles Cancer Surveillance Program where they discuss central cancer registries. The third in this series will be led by Dr. Alison Van Dyke of NCI/SEER who will focus on the SEER Registry. They can be found here: https://podcasts.apple.com/us/podcast/capcast-from-the-college-of-american-pathologists/id1279391140.

Please join us in welcoming Natalie Archer, PhD, to the NAACCR community.

Natalie is the new Director for the Texas Cancer Registry at the Texas Department of State Health Services. Natalie served as the interim director from November 2022 until this past April, when she accepted the position permanently. She is a native Texan and has worked for the Texas Department of State Health Services for more than 17 years. She has a PhD in Epidemiology from the University of Texas Health Science Center at Houston School of Public Health, an MS in Health Services Research from Texas State University, and a bachelor’s degree in Computer Science from Texas A&M University. Childhood cancer research is a particular interest of hers; she has previously published articles on childhood and adolescent cancer epidemiology topics. In her free time, Natalie enjoys hiking, camping, and exploring local Austin restaurants with her husband and two sons.

Welcome Dr. Archer!

Winny Roshala, BA, CTR
NAACCR Past President
[email protected]

Greetings Everyone!

This “President’s Message” will be a joint effort by me as the Outgoing President and the new NAACCR President, Wendy Aldinger, Director of the Pennsylvania Cancer Registry.

I just wanted to thank you all for allowing me to serve you these past two years. It has been such an honor to work with a Board that faced unprecedented challenges but made tough decisions, that we felt were in the best interest of the NAACCR membership. We stood united, shoulder to shoulder, to continue to move forward! I thank them all for their selfless dedication. Thank you all for such an incredible, albeit unexpected journey!

Much time and careful, thoughtful deliberation was spent these past two years on developing the foundation for the NAACCR Strategic Priorities and Initiatives for 2023-2027. I know there are exciting times ahead for NAACCR!

The culmination of finally having the first NAACCR in-person conference in four years was truly an amazing event! Hosted by the Louisiana Tumor Registry, with the theme of “Resilience and Recovery: Charting the Path Forward for Cancer Surveillance,” the conference began with a rousing opening ceremony by the Mardi Gras Indian performers. Their energy in sound and dance was so unique and special to set the tone for our conference! Over 350 people attended the conference with 81 first-time attendees! The theme truly reflected our trials and tribulations, leading to the in-person conference comeback! It was wonderful to see so many current and past members in attendance, with more of a reunion feel! The conference content was rich with topics for both operations and research perspectives. There was something for everyone! The Mentorship breakfast and Birds of a Feather session were both packed with attendees and provided an interactive, engaging, and enlightening session. It was SO great to see friends and colleagues again. Many thanks to all who worked so diligently to provide us with an amazing NAACCR Conference experience!

As I pass the gavel on to Wendy, I look forward to supporting her and the Board’s initiatives. Under Wendy’s leadership as NAACCR President, the future opportunities for NAACCR look amazing!

Thank you all for such an incredible experience!

Wendy Aldinger, RHIA, CTR
NAACCR President
Pennsylvania Cancer Registry

Hi everyone, I hope you are having a great summer. I want to thank Winny Roshala for her leadership these last two years. With her guidance the NAACCR Board along with the Steering Committee chairs, the Strategic Management Plan Work group and NAACCR staff have developed the Strategic Priorities and Initiatives for 2023-2027. These Priorities and Initiatives will be the road map to guide NAACCR to meet the current and future needs of the cancer surveillance community. Stay tuned for more details on the Priorities and Initiatives and ways you can help in future issues of the NAACCR Narrative.

I want to thank you for giving me the opportunity to serve as the NAACCR President for the next two years. Our goal will be to take action on the priorities. I look forward to working with all of you and want to thank the 2023-2024 NAACCR Board Members for their willingness to serve:

• Past President- Winny Roshala, Cancer Registry of Greater California
• Treasurer- Kevin Ward, Georgia Cancer Registry
• Advisory Board Member- Lori Swain, NCRA

Representatives at Large:

• Monique Hernandez, Florida Cancer Data System
• Lihua Liu, Los Angeles Cancer Surveillance Program
• Lori Koch, Illinois State Cancer Registry
• Joshua Mazuryk, Ontario Cancer Registry
• Bozena Morawski, Cancer Registry of Idaho
• Sarah Nash, MPH, State Health Registry of Iowa

I am so sorry I was not able to attend the Annual Conference. I miss you all and can’t wait to see you in Boise next year. The Board and I are here for you, please reach out at any time. I am looking forward to all we can accomplish.

Thank you,

Wendy Aldinger, RHIA, CTR
NAACCR President
Pennsylvania Cancer Registry

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

Upcoming Webinar Presentations

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]).

Fernanda Silva Michels, MSc, PhD, CTR
Program Manager of Data Quality and Integration
[email protected]

The Global / International Cancer Surveillance education resources portal https://education.naaccr.org/international has as extensive variety of educational content, including the new Principles of Cancer Registries training series. This training is part of a project where NAACCR has worked with Jennifer Seiffert and Tracy King (CommPartners, InspirEd) to convert the existing TEPHINET/CDC training into an e-learning product accessible through the internet and suitable for individual self-study in low-to-middle income countries.

The first module, titled Principles of Cancer Registries: Data Sources and Data Collection, presents in a modernized format, methods for evaluating the quality of cancer registry data. The units in this module cover principles of data quality, comparability, validity, timeliness, completeness, qualitative and quantitative methods, and a case study for practice.

On the second module, titled Principles of Cancer Registries: Assessing Data Quality, users will gain an overview of the protocols and standards needed to collect and classify high quality cancer registry data that can be compared to other worldwide data.

This Summer, NAACCR posted the third training module of the Principles of Cancer Registries series titled Data Management. This course includes important concepts for managing the Cancer Registry data, including an orderly multi-step workflow that focuses on data accuracy, use of appropriate software, and recommended procedures for securing the data from threats and unauthorized use.

Although the course emphasis is cancer surveillance in low- and middle-income countries, the general principles covered are applicable worldwide. The course is free! Users just need to set up a MyNAACCR account. Visit the NAACCR international portal for more information!

*Changes to existing data items that result from experience in collecting the data, questions received from registrars or reliability studies generally will not require field testing. However, changes to codes made for other reasons may require field testing to ensure that the new codes and coding instructions can be accurately applied in registry settings. Change requests made in October that the MLTG determine need to be field tested may postpone the implementation year.