Winter 2023 NAACCR Narrative Leave a comment


Recinda Sherman, MPH, PhD, CTR
NAACCR Program Manager of Data Use and Research
[email protected]

 

 

We all know the about the Noble prize, but some of you may not be aware of the satirical Ig Noble Prize that honors unusual scientific achievements. In September 2022, the Ig Noble Prize in Medicine was awarded to a group of researchers who showed that when patients go through chemotherapy for autologous hematopoietic stem cell transplantation, they may suffer fewer harmful side effects if eating ice cream is part of the procedure. Perhaps we need a NAACCR Taskforce to investigate how we might collect the dosage of ice cream?

Read all about it here: https://www.nature.com/articles/s41598-021-02002-x.

 

NAACCR Call for Data (CFD)

This year we had 68 of 70 registries successfully submit the NAACCR Call for Data, and all submitted in the XML format. All but one US registry has or plans to submit the 12-month data for cases diagnosed in 2021. This was an extremely tough year for many registries for myriad reasons, underscoring the on-going need for additional registry support and resources. We are still in the data quality evaluation process, and we will provide an update on how we will handle 2020 Completeness as soon as the evaluation is complete.

During CFD, the new Match*Pro Patient-level Deduplication protocol was a success based on the goal of deduplication, but there was a significant time investment for many registries. This year, we have not yet made the decision about whether we will require the update, tumor-level deduplication protocol for CFD. I strongly encourage you to attend the training webinar Match*Pro Tumor-Level Deduplication Training for NAACCR Certification on March 6. Here is the link to register: https://naaccr.zoom.us/webinar/register/WN_6RVvEFgCSdG1Ci7FE6yBFA. For the past several months, we have been testing the update on a variety of registries. Will Howe at IMS is incorporating feedback into improving the program and providing resources to best support the registries. As you begin to work with this update, please reach out to me with any issues and concerns, so that we can use that information to inform our decision of when to make the Match*Pro Deduplication Tumor-level Protocol mandatory.

 

2020 Data

As expected, the impact of the pandemic has resulted in changes in cancer rates that do not reflect changes in actual burden. At this time, we do not plan to include 2020 rates in trend data. We are working with our partners to develop standardize language that will provide critical context to users about interpretation of the rates. As mentioned above, we will accommodate for the impact of pandemic related disruption of medical services on our completeness assessments for the purpose of Certification. But, again, we are still in the evaluation process.

 

Annual Report to the Nation

NAACCR and our collaborators are still working on the Part II publication for the Annual Report to the Nation covering data through diagnosis year 2018. This publication is an early assessment of the 2020 data, and it will be published late winter or early spring. NAACCR is the lead author for the next annual report, but due to intense interest in post-covid data by the public and the media, we have skipped an Annual Report for the data through diagnosis year 2019. The next ARN will be a special focus on 2020 data, and we hope the publication will help provide context for interpretation of results for local and regional data as well.

 

NAACCR Geocoder

As you are hopefully aware, we have been undergoing various security assessments for the NAACCR/TAMU Geocoder. We have materials regarding the TAMU/NAACCR Geocoder Security Assessment available for registries to review at: https://geo.naaccr.org/About/SecurityAssessment.aspx (this link requires a MyNAACCR sign-in). At this link (which is also available under the About Tab in the TAMU/NAACCR Geocoder Platform https://geo.naaccr.org/About/), we have posted:

  • Results of the 2022 security assessment
  • Written Executive Summary
  • Oral overview of results (video presented to the NAACCR Geocoder Technical WG)

There is also general security information in the Data Confidentiality and Security section, also on the About Tab. We continue to monitor and assess the TAMU/NAACCR geocoder for security weaknesses and will release updated annual assessments.

If you or your registry would like additional details, please contact me. Because detailed security information is both proprietary and has the potential to identify vulnerabilities, we will need a signed NDA before we can release additional information.

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For more information or to get involved in one of these issues, please contact me. And, as always, if you have any questions, concerns, or revolutionary ideas in any other part of the NAACCR Research and Data Use area, please contact me [email protected].

 

 

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