Program Strategy 1: Surveillance

All funded programs are required to develop surveillance activities in partnership with their state cancer registry.

  1. Analysis of cancer registry data to estimate the cancer burden associated with hereditary cancer syndromes (yearly analysis of the most recent data available).
  2. Mapping or GIS-related analyses to understand overlap between burden and access (completed once in the first year of funding).

Additional surveillance activities to consider working on with the state cancer registry, include but are not limited to—

  1. Pilot testing of new data elements.
  2. Tracking use of services such as cancer genetic testing or tumor testing for LS.

All funded programs are required to field questions on a state Behavioral Risk Factor Surveillance System (BRFSS) survey at least once during the period of performance. Funding for this activity must be included in the program budget. The content of the questionnaire should be consistent across all funded programs. Questions to be fielded will be decided by recipients and CDC within 3 months of funding award.

Funded programs are strongly encouraged to use, expand, or develop additional data sources for measuring and monitoring cancer genetic services use such as family history screening, referrals to cancer genetic services, use of genetic counseling and testing, and use of different types of genetic tests such as cancer genetic panel tests, universal screening for LS, and cascade screening). This may include, but is not limited to, claims data, clinical or health systems data, or other survey data.

All analyses of data and products, including results summaries, data briefs, posters, presentations, and publications, should be reported to CDC yearly as part of reporting requirements.

All programs should develop dissemination plans for analyses of surveillance or other data. Plans should address methods for dissemination to all relevant stakeholder groups and modes.

All programs should evaluate their surveillance activities and report on data accuracy and utility, timeliness, usefulness, strengths, limitations, and reach of dissemination efforts. Data usage reports can provide programs with a standard method to evaluate each data source they used during the period of performance, but other methods of evaluation may also be discussed with the project officer. CDC will provide a template for a data usage report.