Individual Study / CCFRC

Colon Cancer Family Registry Cohort

Colon Cancer Family Registry Cohort

CCFRC logo
Initiatives -
Start Year
This work was supported by grant UM1 CA167551 from the National Cancer Institute and through cooperative agreements with the following CCFRC sites: Australasian Colorectal Cancer Family Registry (U01 CA074778 and U01/U24 CA097735); Mayo Clinic Cooperative Family Registry for Colon Cancer Studies (U01/U24 CA074800); Ontario Familial Colorectal Cancer Registry (U01/U24 CA074783); Seattle Colorectal Cancer Family Registry (U01/U24 CA074794); University of Hawaii Colorectal Cancer Family Registry (U01/U24 CA074806); and USC Consortium Colorectal Cancer Family Registry U01/U24 CA074799). The targeted minority recruitment was supported by grant R01 CA104132. The genome-wide association studies (GWAS) were supported by grants U01 CA 122839, R01 CA143237 and U19 CA148107. The CIMP and KRAS mutation testing was supported by R01 CA118699. Additional support for case ascertainment was provided from the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute to the Fred Hutchinson Cancer Research Center (Control Nos. N01-CN-67009 and N01-PC-35142, and Contract No. HHSN2612013000121), the Hawai‘i Department of Health (Control Nos. N01-PC-67001 and N01-PC-35137, and Contract No. HHSN26120100037C), and the California Department of Public Health (contracts HHSN261201000035C awarded to the University of Southern California and HHSN261201000140C awarded to the Cancer Prevention Institute of California), the following US state cancer registries: AZ, CO, MN, NC and NH, and by the Victorian Cancer Registry, Australia and the Ontario Cancer Registry, Canada.


Investigators Contacts
  • Dr. Jane C. Figueiredo
    Cedars-Sinai Medical Center
  • Allyson S. Templeton
    Fred Hutchinson Cancer Research Center
  • Prof. Mark A. Jenkins
    University of Melbourne


Study design
Population cohort
Follow Up
Active follow-up: Approximately every 4–5 years after completing their baseline questionnaire, all participants of population-based casefamilies (but not control-families) and clinic-based families were asked, either by telephone interview or by self-completed questionnaire (mailed or online), for updates on their personal and family history of cancer as well as history of surgery, cancer screening and some risk factors. Passive follow-up (regularly conducted on all participants to obtain information on new cancers, vital status and cause of death): data linkage with local and national death files, population-based cancer registries and electoral rolls; annual newsletters; reviews by genetic counsellors; and other mailings to participants.

Marker Paper

Jenkins MA, Win AK, Templeton AS, Angelakos MS, Buchanan DD, Cotterchio M, Figueiredo JC, Thibodeau SN, Baron JA, Potter JD, Hopper JL, Casey G, Gallinger S, Le Marchand L, Lindor NM, Newcomb PA, Haile RW; Colon Cancer Family Registry Cohort Investigators. Cohort Profile: The Colon Cancer Family Registry Cohort (CCFRC). Int J Epidemiol. 2018 Apr 1;47(2):387-388i. doi: 10.1093/ije/dyy006.

PUBMED 29490034


Sources of Recruitment
  • Families

Number of participants

Number of participants
Number of participants with biosamples
Supplementary Information
Colorectal cancer cases and their family members.


Availability of data and biosamples


Availability of access information

On the study website :,clini...