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Disease Registries

Disease Registries

  • Disease registries are centralized databases for the collection of information of specific diseases, for example cancer registries (Cromley & McLafferty, 2012b).
  • Cancer registries are the most extensive disease registries in the U.S. (Cromley & McLafferty, 2012b).

National Program of Cancer Registries (NPCR)

  • Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on the occurrence of cancer; the type, extent, and location of the cancer; and the type of initial treatment (Centers for Disease Control and Prevention, 2013k).
  • Tools that are available without researcher approval:
    • The United States Cancer Statistics (USCS): Incidence and Mortality Web-based report contains official federal government cancer statistics for new cancer cases and deaths.
    • State Cancer Facts provides state-specific data on lung, colorectal, female breast, and prostate cancers, including the estimated number of new cancer cases, cancer deaths, and the age-adjusted mortality rates for cancer deaths by race for each state.
    • CDC's Interactive Cancer Atlas (InCA) uses USCS data to create United States maps that allow you to make quick comparisons including incidence or mortality rate or count, cancer site, gender, race/ethnicity, and year.
    • CDC WONDER includes variables on the year of diagnosis, state, region, or division of the United States, sex, race, ethnicity, age, primary site, and childhood cancer.
  • Tools available with approved researcher status:
    • The Research Data Center (RDC) provides access to restricted National Center for Health Statistics (NCHS) data, as well as a variety of other groups within the Department of Health and Human Services.
  • Registry Plus™ Software Programs for Cancer Registries is a suite of publicly available free software programs for collecting and processing cancer registry data (Centers for Disease Control and Prevention, 2013k).