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Colon Cancer Family Registry Cohort (CCFRC)
Colon Cancer Family Registry Cohort logo
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Sample details

CCFRC aims to collect pedigree information, epidemiological data, and related biological specimens from participants with and without colorectal cancer or family history of the disease, as a resource for studies on colorectal cancer; and to identify a population at high risk of colorectal cancer that could benefit from preventive strategies. Over 42,000 participants from more than 15,000 families have completed the baseline questionnaire since the study began in 1998. This includes population-based and clinic-based cohorts recruited at seven institutes in the United States, Canada and Australasia. Participants are followed up with questionnaires every 4 to 5 years, and passive follow-up is conducted regularly through data linkage and mail contact with participants.

Study design
Registry, Cohort - clinical, Cohort, Biobank

Number of participants at first data collection

42,502 (participants)

Age at first data collection

Varied (participants)

Participant year of birth

Varied (participants)

Participant sex
All

Representative sample at baseline?
No

Sample features

Adults
Cancer patients
Family members
Older and elderly people
Patients and clinical populations
Dataset details
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Countries

Australia, Canada, United States of America

Year of first data collection

1998

Primary Institutions

Cleveland Clinic (Healthcare/Medical, United States of America)

Fred Hutch Cancer Center (Healthcare/Medical, United States of America)

Lunenfeld-Tanenbaum Research Institute (LTRI) (Research, Canada)

Mayo Clinic (Healthcare/Medical, United States of America)

University of California, San Francisco (UCSF) (Academic, United States of America)

Links

coloncfr.org/

Profile paper DOI

doi.org/10.1093/ije/dyy006

Funders

National Cancer Institute (NCI) (Government, United States of America)

National Institutes of Health (NIH) (Government, United States of America)

Ongoing?
Yes

Data types collected

dataLinkage
Quantitative data collection
  • Interview – phone
  • Secondary data
  • Self-completed questionnaire – online
  • Self-completed questionnaire – paper or computer assisted
Qualitative data collection
  • None
Neuroimaging data collection
  • None
Linked or secondary data
  • Healthcare data
  • Mortality data
  • Other government data
Features

Engagement

  • Patients, service users, lived experience involvement
  • Community engagement
  • Keywords

    Biological samples/biospecimens
    Cancer
    Family environment and factors
    Gastrointestinal cancer (e.g. bowel, colon, gastric cancer etc.)
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