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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

Fred Hutch Cancer Center

Lunenfeld-Tanenbaum Research Institute (LTRI)

Mayo Clinic

University of California, San Francisco (UCSF)

Links

coloncfr.org/

Profile paper DOI

doi.org/10.1093/ije/dyy006

Funders

National Cancer Institute (NCI)

National Institutes of Health (NIH)

Ongoing?
Yes

Data types collected

dataLinkage
Quantitative data collection
  • Interview – phone
  • Secondary data
  • Self-report 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

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

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