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May 13 -- The Centers for Disease Control and Prevention (CDC) has submitted the information collection request titled “National Program of Cancer Registries Cancer Surveillance System” to the Office of Management and Budget (OMB). Comments to OMB by June 15, 2022 are invited.

In 2018, the most recent year for which complete incidence information is available, almost 600,000 people died of cancer and more than 1.7 million were diagnosed with cancer. It is estimated that 16.3 million Americans are currently alive with a history of cancer. In the U.S., state/territory-based central cancer registries are the only method for systematically collecting and reporting population-based information about cancer incidence and outcomes such as survival. These data are used to measure the changing incidence and burden of each cancer; identify populations at increased or increasing risk; target preventive measures; and measure the success or failure of cancer control efforts in the U.S.

In 1992, Congress passed the Cancer Registries Amendment Act which established the National Program of Cancer Registries (NPCR). The NPCR provides support for state/territory-based cancer registries that collect, manage, and analyze data about cancer cases. The state/territory-based cancer registries report information to CDC through the National Program of Cancer Registries Cancer Surveillance System (NPCR CSS) (OMB Control No. 0920-0469, Exp. 12/31/2022). CDC plans to request OMB approval to continue collecting this information for three years. Data definitions will be updated to reflect changes in national standards for cancer diagnosis and coding. No changes to the total estimated annualized burden hours or number of respondents are anticipated.

The NPCR CSS allows CDC to collect, aggregate, evaluate, and disseminate cancer incidence data at the national level. The NPCR CSS is the primary source of information for the United States Cancer Statistics (USCS), which CDC has published annually since 2002. The latest USCS report published in 2021 provided cancer statistics for 99% of the U.S. population from cancer registries in the United States. Prior to the publication of USCS, cancer incidence data at the national level were available for only 14% of the population of the United States.

The NPCR CSS also allows CDC to monitor cancer trends over time, describe geographic variation in cancer incidence throughout the country, and provide incidence data on racial/ethnic populations and rare cancers. These activities and analyses further support CDC's planning and evaluation efforts for state and national cancer control and prevention. In addition, datasets can be made available for secondary analysis.

Respondents are NPCR-supported central cancer registries (CCR) in 46 U.S. states, 3 territories, and the District of Columbia. Fifty CCRs submit data elements specified for the Standard NPCR CSS Report. Each CCR is asked to transmit two data files to CDC per year. The first NPCR CSS Standard file, submitted in January, is a preliminary report consisting of one year of data for the most recent year available. CDC evaluates the preliminary data for completeness and quality and provides a report back to the CCR. The second NPCR CSS Standard file, submitted by November, contains cumulative cancer incidence data from the first diagnosis year for which the cancer registry collected data with the assistance of NPCR funds (e.g., 1995) through 12 months past the close of the most recent diagnosis year (e.g., 2018). The cumulative file is used for analysis and reporting.

National Program of Cancer Registries Cancer Surveillance System https://www.cdc.gov/cancer/npcr/index.htm
Submission to OMB: https://www.reginfo.gov/public/do/PRAViewICR?ref_nbr=202204-0920-010 Click IC List for data collection instrument, View Supporting Statement for technical documentation.  
FRN: https://www.federalregister.gov/d/2022-10379    
For AEA members wishing to submit comments, "A Primer on How to Respond to Calls for Comment on Federal Data Collections" is available at https://www.aeaweb.org/content/file?id=5806

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