NAACCR’s Summer 2023 Update for Research and Data Use

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NAACCR Program Manager of Data Use and Research, Recinda Sherman, provides updates for CiNA data products, Call for Data, and more.

Wow. The annual conference was both rewarding and overwhelming! It was wonderful to connect (although so briefly) with many of you. New Orleans is such a beautiful and vibrant place—full of whimsy and history and wonderful food. Below are some fun places I was able to visit after the annual conference. Looking forward to seeing you in Boise!

 

CiNA Data Products

Despite some challenges, all our CiNA data products were updated with 2020 data on schedule in early July 2023.

CiNA data products include:

(Hey, what about CiNA Monographs?! See CiNA Monographs section below!)

As a reminder, overall, CiNA data show about a 10% drop in expected cases for diagnosis year 2020—a reduction that is in alignment with NPCR and SEER data, including pathology reports. Because the drop does not represent a change in underlying burden, rather a change in medical care and access, we do not recommend using 2020 data in trend analysis.

CiNA Public Use Datasets

As with prior years, there are two CiNA Public Use Datasets:

  1. Standard Public Dataset: The NAACCR CiNA Public Use Standard dataset uses 20-year age groups for age-adjusting. US registries have diagnosis years 2000- 2020 available, with the exception of Puerto Rico. Canada has diagnosis years 2001- 2020, and Puerto Rico has diagnosis years 2010-2020 available. The difference in year range is due to the limitations of the underlying denominator data to support the 20 age groups. The standard dataset can be requested using the “Public Use Research File” request type in DaRT.
  2. Special Request Public Use Dataset: A user can also request the old, 19 age group Public Use Dataset, starting with diagnosis year 1995 for all eligible registries. In the future, these two types will be separate Public Use Data Requests in DaRT. But for now, a user will need to reach out to me for access to the 19 age group dataset.

CiNA Monographs

We first produced our flagstaff CiNA product, the CiNA Monograph, twenty years ago–covering incidence for diagnosis years 1996-2000. Since that first publication in 2003, the Monographs have expanded to cover mortality, survival, and prevalence statistics, and we are currently developing a population-attributable risk volume.

More recently, we have been presenting CiNA statistics in interactive, queriable systems. Five years ago, we made a significant investment in our current system, CiNA*Explorer. Most of the statistics are already duplicated between the two CiNA Products (the Monographs and Explorer).

The effort to produce a static pdf is more extensive than the on-line systems—requiring manual production, editing and additional review. Additionally, in recent years and particularly last year, we have had to duplicate production efforts in some areas due to late breaking updates/error corrections from a handful of registries. Because of similar issues, many agencies and state registries have moved away from producing pdf volumes towards interactive systems, like CiNA*Explorer, which can be produced more nimbly and updated mid-cycle if needed. Last year, depending upon the Monograph Volume, we had 14 to 42 times more web traffic to CiNA*Explorer than the CiNA Monographs.

With this in mind, we are transitioning away from the CiNA Monographs. And this year, due to the aforementioned challenges, we did not produce a CiNA Monograph for diagnosis years 2016-2020. We have released the statistics for 2020 but as the switch to no monograph was unplanned this year, we are still in the process of updating technical and other reference information on our CiNA Monograph webpage.

Moving forward, the CiNA Editorial Workgroup has been tasked with thoughtfully migrating all statistics from the CiNA Monographs to CiNA Explorer over the next two years. The Workgroup will also ensure critical reference material, such as the technical section, is updated and remains accessible. Work on additional statistics, such as attributable risk, will continue and be incorporated into CiNA*Explorer.

NAACCR Call For Data

Now that our annual conference has passed, that can only mean that Call for Data season is upon us. The majority of the Call for Data resources have been updated.

Our Call for Data timeline is similar to prior years:

  • August 28, NAACCR Call for Data Instructional Webinar
  • September 1, NAACCR Documents Tab and Edits updated
  • 2nd week of October, NAACCR*Prep and Configuration Files released
  • November 1, Call for Data Portal Opens
  • December 5, Call for Data Due

As described in the Spring RDU Update, for the purpose of Certification, we will be requiring full patient-level deduplication and Year 1 of the tumor-level deduplication will be rolled out. Patient-level deduplication will be assessed based on the honor system, and we will collect information in the CFD Portal similar to last year. However, tumor-level deduplication will be assessed on your submission file.

To calculate the duplicate rate accurately, registries will be submitting their Match*Pro archives as well as the day of diagnosis to ensure our evaluation of tumor-level deduplicate assessment matches each registries assessment. More information will be found in the Call for Data Materials and on the Instructional Webinar.

2021 Completeness

At this time, there is no evidence of wide-scale reduction of cases due to changes in medical care and access. However, the workgroup that addressed the adjustment of the 2020 Completeness estimate to accommodate the impact of Covid-19 is still meeting to assess and discuss 2021 completeness. This workgroup will again review submitted data and will identify a standard method of adjustment to the 2021 data if needed for both NPCR and NAACCR.

This workgroup will have the same two goals in mind when assessing whether the Completeness Method for Certification needs to be adjusted for 2021 diagnosis year:

  • Do not penalize registries for decreased numbers of cancer cases diagnosed due to changes in medical access.
  • Do not adjust away operational issues (due to COVID-19 or other factors) that resulted in decreased number of cancer cases.

As always, if you have any questions, concerns, revolutionary ideas, or new projects that might help us get an Ig Noble Prize in the NAACCR Research and Data Use area, we’d love to hear it.

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