About the Colon Cancer Family Registry

Mayo Clinic Colon Cancer Family Registry landing page image

The Colon Cancer Family Registry (Colon CFR) is an international research infrastructure for investigators interested in conducting population and clinic-based interdisciplinary studies on the genetic and molecular epidemiology of colon cancer and its behavioral implications. A central goal of the Colon CFR is the translation of this research to the clinical and prevention setting for the benefit of Registry participants and the general public. The Colon CFR has information and biospecimens contributed by greater than 11,300 families across the spectrum of risk for colon cancers and from population-based or relative controls.

Of particular interest are:

  • identification and characterization of cancer susceptibility genes
  • definition of gene-gene and gene-environment interactions in cancer etiology
  • translational, preventive, and behavioral implications of research findings

Special features include:

  • population-based and clinic-based ascertainment
  • systematic collection of validated family history
  • epidemiologic risk factor data
  • clinical and follow-up data
  • biospecimens (including tumor blocks and EBV transformed cell lines)
  • ongoing molecular characterization of the participating families

The Colon Cancer Family Registry (Colon CFR) remains the largest group of colon cancer families ever gathered together for research. This size allows us to conduct studies that were not possible before. We have the ability to discover the effects of environmental exposures and lifestyle differences that other studies were too small to understand. We can also search for genetic factors that may play major or minor roles in vulnerability to colorectal cancer. And ultimately, we can analyze how environmental factors interact with genetic factors. Mayo Clinic is one of six Colon CFR centers that began enrolling families in 1998. Today there are over 13,000 families enrolled from the United States, Canada, Australia, and New Zealand. This includes many families in which colorectal cancer has happened only one time as well as families in which many individuals have been diagnosed with colon cancer. The CFR enrolls men and women, older and younger people with colorectal cancer, families of all different ethnic backgrounds, as well as spouses and relatives who have not had cancer. Over 50,000 of those long risk-factor questionnaires have been completed by the families and controls that enrolled, just like you.

At the Mayo branch of the Colon CFR, we have enrolled more than 1,000 families and 4,000 individuals into our registry. We are so grateful to all those that have returned the blood samples and lifestyle questionnaires – we know how long that takes to complete! We also are so appreciative for the participation of over 496 spouses and 2,013 blood relatives who have not had any cancers. These individuals allow us the opportunity to compare similarities and differences between those with and without cancer.