Spring 2020 NAACCR Narrative Leave a comment


Recinda Sherman, MPH, PhD, CTR
NAACCR Program Manager of Data Use and Research
rsherman@naaccr.org

 

 

Research & Data Use

As we navigate these challenging times, it is important to remember that the work we do is important. Cancer surveillance remains a vital piece in the effort to reduce the burden of cancer in our communities. For decades in the U.S., we have been committed to providing high quality demographic data to quantify the impact of race and social issues on cancer outcomes. In the past few years, we have greatly increased the availability of area-based SES measures in the CiNA dataset to support such research. Currently, NAACCR members are coordinating with SEER to begin to collect Covid-19 data in our registry data to assess the direct and indirect impact of the disease on the cancer population (see more in Stephanie’s section—Collecting Covid-19 and its Impact on Cancer Treatment). These activities are a testament to the unwavering commitment of NAACCR members to high quality data collection that is responsive to increasing, and relevant, demands on data use.

 

Certification

Certification has been released along with the state-level data assessments (including DQI, CiNA Submission Summary & Certification reports) through the Call for Data Submission Site. If you have not already checked it out, you will find your historic reports (for submission years 2016-2019) here: https://www.naaccr-cina.org/ along with a new Data Visualization Tool for the data assessment reports. An introductory tutorial is available on our Call for Data Site: https://www.naaccr.org/call-for-data/#Submit. The Data Visualization Tool is presented in Tableau, so registries without a Tableau license can download the free reader here: https://www.tableau.com/products/reader.

Along with Certification, NAACCR has also released the inaugural Fitness for Use for Survival/Prevalence Recognition. Qualifying registries may download the updated logos here: https://www.naaccr.org/certification-criteria/. Official certifications will be sent out after our Virtual 2020 Conference.

 

CiNA

Our CiNA 2013-2017 Monograph has been released. This year’s CiNA Report marks the 30th year of publication and represents the most complete assessment of cancer burden in North America. We are grateful for the efforts of NAACCR member registries to collect high quality and timely cancer surveillance data to support such publications.

Now that the CiNA Monograph is released, we are able to release the CiNA Research Datasets for 1995-2017, including the CiNA Public Use File. To access the Public Use File or submit a proposal for a CiNA Research File go here: https://www.naaccr.org/cina-data-products-overview/.

The CiNA Monograph encompasses five separate volumes:

  1. Volume One: Combined Incidence for the United States, Canada, and North America. Includes aggregated cancer incidence data by site, sex, race, ethnicity, and stage, including pediatric cancer and cancer by stage at diagnosis from the high quality registries in the U. S. and Canada.
  1. Volume Two: Registry-Specific Cancer Incidence in the United States and Canada. Includes registry-specific cancer incidence rates by cancer site, sex, race, ethnicity and stage for all NAACCR member registries submitting data for inclusion in the monograph. To help interpret the statistics, data tables for each registry include demographic and data quality information and registry descriptions are presented.
  1. Volume Three: Registry-Specific Cancer Mortality in the United States and Canada. Includes registry-specific cancer death rates by cancer site, sex, race, and ethnicity.
  1. Volume Four: Cancer Survival in the United States and Canada. Includes cancer survival data for the U.S. and Canada from 61 registries on more than 13 million cases diagnosed among North Americans between 2010 and 2016.
  1. Volume Five: Cancer Prevalence in the United States and Canada. Includes cancer prevalence estimates for the U.S. and Canada from 61 registries on more than 13 million cases diagnosed among North Americans between 2007 and 2016.

 

There are two important methodological changes to the CiNA Monograph.

  1. Registry inclusion/exclusion. We used to apply the registry inclusion/exclusion criteria for each year and a registry needed to “pass” all five years to be included in the monograph. However, since we do not present the data by year, we applied the inclusion/exclusion criteria based on the 5-year aggregated data. This results in more consistent data and the most complete coverage for both US and Canada.
  1. Case Counts. We used to include Total Case Counts in the Incidence and Mortality Tables, but this year we switched to Average Annual Count. This provides a more intuitive metric and is in-line with the practice of many registries. It is important to note that this is a change in how we are presenting the data but not in what data are presented. We are still suppressing at <6 cases, but instead of the 5-year count, we are presenting the average over the 5 years. Previously, users would divide the count by 5 to get this number.

The current CiNA 2013-2017 Monograph (and accompanying technical resources) is available here: https://www.naaccr.org/cancer-in-north-america-cina-volumes/.

 

Call for Data

Our 2018 diagnosis year Call for Data planning has begun. This will be a year with a number of challenges that may impact our submissions. We will be establishing a Call for Data listerv site to help facilitate communication on the Call for Data timelines, process, and tools.

 

Note: there are still a few registries that need to complete or review the CaRRI database. This process is requested at time of Call for Data but can be completed throughout the year.

As always, if you have any questions or concerns, please contact me at rsherman@naaccr.org.

 

 

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