Results from a State and Territorial Survey about Updating the 2013 CDC Guidelines for Investigating Cancer Clusters

Executive Summary

In federal fiscal (FY) year 2019, Congress appropriated funding for the Centers for Disease Control and Prevention (CDC)/Agency for Toxic Substances and Disease Registry (ATSDR) to update the 2013 Guidelines “Investigating Suspected Cancer Clusters and Responding to Community Concerns: Guidelines from CDC and the Council of State and Territorial Epidemiologists” (hereafter referred to as 2013 Guidelines). To update the 2013 Guidelines, CDC sought input from the public; conducted literature reviews and an environmental media scan; held subject matter expert discussions; and gathered information from state, tribal, local, and territorial (STLT) public health agencies. This report summarizes results from a survey of STLT public health agencies.

In November 2020, following approval for information collection on October 20, 2020 (OMB Control No. 0920-0879), CDC/ATSDR sent STLT public health agencies a survey asking about strengths and weaknesses of the 2013 Guidelines, suggested revisions to the 2013 Guidelines, and facilitators and barriers for effectively addressing cancer cluster inquiries. All 50 states, the District of Columbia, and 2 U.S. territories completed the survey for a state response rate of 100% and overall response rate of 90%.

The primary findings from the survey are included in this report. Results reflect many strengths and areas for improvement for consideration when updating the 2013 Guidelines. Primary findings include the following:

  • States/territories receive an average of nine cancer cluster inquiries per year.
  • Approximately half (47%) of survey respondents reported that they routinely do proactive evaluations of cancer data; however, only one respondent suggested this approach should be used to identify unusual patterns of cancer.
  • Most respondents agree with CDC’s current definition of a cancer cluster, although some suggestions were made for enhancing the language to address etiological factors and provide different terms to describe “cancer clusters”.
  • Most respondents were neutral regarding whether the 4 steps in the 2013 Guidelines need to be revised. Those that reported whether the steps in the 2013 Guidelines should or should not be revised were almost equal. Of those that suggested the steps should be revised, 67% suggested either eliminating steps 3 and 4 (unless resources become available) or expanding the number of steps to provide more details.
  • Almost 90% of respondents reported that it would be helpful if CDC/ATSDR expanded the scope of the 2013 Guidelines to more broadly focus on cancer and environmental hazards versus cancer clusters alone.
  • Survey respondents reported that investigations were more successful when they involved collaboration with other government entities and/or academic or medical partners. Regarding federal assistance, respondents wanted the ability to contact subject matter experts who could provide technical assistance in all aspects of a local cancer investigation.
  • Survey respondents reported that addressing staffing and data limitations would be of great value. Additional tools and templates such as decision trees clearly outlining the Guidelines’ process, the development of protocols and standard operating procedures, and providing education to community members would assist with investigations.

These findings along with other inputs will contribute directly to the updates to the 2013 Guidelines.

Read the full report. pdf icon[PDF – 1 MB]

Page last reviewed: February 22, 2022