Cancer in North America CiNA Data Products

Cancer in North America CiNA Data Products

CiNA DATA PRODUCTS OVERVIEW

NAACCR provides incidence data to researchers for analysis. These data are the most comprehensive cancer incidence data set for North American and contains data from US states and Canadian provinces from central registries meeting our threshold of high quality data.

Important steps before submitting an application request:

  • The list below identifies the variables that are available in the file. Review the list to determine if the file contains the data necessary for your analysis.
  • Develop a working knowledge of cancer surveillance methods and an understanding of the data coding schemes used for your proposed study period.
  • Thoroughly review the Information for CiNA Research Data Investigators.
  • Review and understand the CiNA Research inclusion criteria, which central registries are included in the file, and the years for which data from each registry are included in the CiNA Deluxe data file.
  • If you are not a NAACCR member, contact a NAACCR member registry or other member organization and discuss your proposal idea to determine if it is feasible based on available CiNA Deluxe data. The principal investigator for any CiNA Research application must be a NAACCR member. Researchers who are not NAACCR members may serve as co-investigators and/or apply for individual membership.

The links below provide the information on 1) the list of variables included in the CiNA Research Analytic File data file and 2) registry data fitness-for-use (meeting high-quality incidence data standards).The links below provide the information on 1) the list of variables included in the CiNA Research Analytic File data file and 2) registry data fitness-for-use (meeting high-quality incidence data standards).

 

To request any of the CiNA Data Sets, included registry-only like delay-adjusted, please use DaRT, the NAACCR Data Request Tracking system.

 

CiNA PUBLIC USE DATA SET

The Public Use Dataset contains de-identified data with a limited number of variables. CiNA Public Use is a publically accessible dataset requiring only a signed Data Use Agreement for access. Learn More. Learn More.

 

CiNA RESEARCH DATA SET

This data set contains de-identified data on demographics, cancer type, and treatment information for US and Canada residents diagnosed 1995 to the most current year. CiNA Research is available to NAACCR Members only and researchers must have NAACCR approval for their research project in order to access the data. Learn more.

 

CiNA SURVIVAL/PREVALENCE

This is a subset of CiNA Research. This data set includes data from registries meeting data quality criteria for inclusion in the annual CiNA Survival and Prevalence Monographs. Learn more.

 

DELAY ADJUSTMENT FACTORS AND RATES

State-Level Delay Adjustment Factors are available tor registry personnel for their own state as a Registry  Specific Dataset. National-Level Delay Adjustment Factors are available for research as a special request CiNA Dataset. Please use the DaRT System to request.

 

Timely and accurate calculation of cancer incidence rates is hampered by reporting delay. Reporting delay is the time elapsed before a diagnosed cancer case is reported to the cancer registries. For national reporting, cases are first submitted about two years after the end of a diagnosis year (e.g., a complete 2014 year of diagnosis was first submitted in late 2016). In subsequent submissions, the data for that diagnosis year are updated to reflect: 1) new cases found to have been diagnosed within that diagnosis year; and 2) new information that has been received about previously submitted cases. Modeling reporting delay is used to adjust the current case count to account for anticipated future corrections to the data. These adjusted counts are needed to produce cancer incidence trends that are not impacted by late reporting. The adjustment for undercounts is largest in the most recent diagnosis year reported and diminishes each successive reporting year. But most recent data points are considered the most important, because the current data is used for cancer control and planning activities and is interpreted as a potential harbinger of future trends.

Previously, delay adjustment was available only for a subset of the SEER registries that had been established in the 1970’s through the early 1990’s (i.e. the SEER9 and SEER13 registry groups). Starting in 2015, for the first time, delay factors were released based on a joint effort by NCI, CDC, and the North American Association of Central Cancer Registries (NAACCR) to develop a unified approach for estimating and reporting delay-adjusted rates across all of the U.S. and Canada. The delay-adjusted rates for NAACCR registries, including SEER registries reported in the Cancer Statistics Review, is based on the data submitted to the North American Association of Central Cancer Registries (NAACCR). For the details of the statistical modeling, please refer to the Development of the Delay Model in the website http://www.surveillance.cancer.gov/delay/.

The NAACCR-based factors are stratified by Cancer Site, Registry, Age Group, Race, Ethnicity and Year of Diagnosis. The delay model now includes ethnicity and race x ethnicity (race by ethnicity combination).  The races considered are All races, White, Black, API and AI/AN.  The ethnicity includes Hispanic and Non-Hispanic.

The factors are linked to the appropriate cases (based on the stratifications above) in data submissions for each of the three partners in this joint effort (SEER, NAACCR, and NPCR). As of 2017, each of these groups is able to produce delay-adjusted rates and make their results available to the public.

 

STATE-LEVEL DELAY ADJUSTMENT FACTORS

We encourage registries to evaluate their state-specific delay adjustment factors and rates. To obtain access to the delay adjustment data for your state in SEER*Stat, please use the DaRT System.

 

NAACCR DELAY MODEL EXCLUSIONS

Exclusions across all cancer sites to remove obvious aberrant data

In order to produce stable estimates, the data are carefully examined before fitting the model. Some data are apparent outliers and are removed (e.g. a single submission with a sudden spike up in cases and then a decline in the next submission). These data are removed because the purpose of delay modeling is to project future counts of cases from the most current submission, and an aberrant submission is not likely to occur in the future.

Additional information about the development of the Delay Model and the Methodology, included reference articles, is available on the SEER Website:

Producing Delay Adjusted Rates and Trends Using SEER*Stat and Joinpoint

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