For Researchers

The Colon Cancer Family Registry at Mayo Clinic is part of an international consortium of investigators who conduct population-based and clinic-based interdisciplinary studies on the genetic and molecular epidemiology of colon cancer and its behavioral implications.

A central goal of the Colon Cancer Family Registry is the translation of colorectal cancer research to the clinical setting for the benefit of registry participants and the public.

Registry data

Of particular interest to researchers:

  • Identification and characterization of colorectal cancer susceptibility genes
  • Definition of gene-gene and gene-environment interactions to better understand the etiology of colorectal cancer
  • Determination of translational, preventive and behavioral implications of research findings

Special features of the Colon Cancer Family Registry include:

  • Population-based and clinic-based ascertainment
  • Systematic collection of validated family history
  • Epidemiologic risk factor data
  • Clinical, pathological and follow-up data
  • Biospecimens, including tumor blocks and Epstein-Barr virus transformed cell lines
  • Ongoing molecular characterization of the participating families

International cooperation

The Colon Cancer Family Registry at Mayo Clinic is part of an international consortium of six registry centers.

Centers participating in the international consortium are:

  • University of Hawaii in Honolulu, Hawaii (also partnering with the University of California San Francisco)
  • Fred Hutchinson Cancer Research Center in Seattle, Washington
  • Mayo Clinic in Rochester, Minnesota, and Scottsdale, Arizona
  • University of Melbourne in Melbourne, Australia
  • Cancer Care Ontario in Toronto, Canada
  • Cedars-Sinai Medical Center in Los Angeles, California (also partnering with Cleveland Clinic in Cleveland, Ohio)

Registry participants

The Colon Cancer Family Registry, which began enrolling participants in 1998, remains the largest worldwide group of families ever gathered for colorectal cancer research.

More than 15,000 families from the United States, Canada, Australia and New Zealand are enrolled in the participating colorectal cancer registries.

But more important than the sheer number of families is that families were strategically selected to best represent the continuum of risk — families at both high risk and low risk of colorectal cancer are included in the registries.

About 55% of participants in all the registries are from the United States, 19% from Canada, and 26% from Australia and New Zealand. More than 1,200 families and 4,600 individuals participate in the Mayo Clinic Colon Cancer Family Registry.

Learn more about registry participants.

Resources for researchers

Researchers can apply to the Colon Cancer Family Registry to use this resource as an efficient way to conduct their research. This allows many different researchers to study the same families instead of recruiting their own study population.

For more information about using the data, contact the Colon Cancer Family Registry Informatics Center.

The large number of participants in the worldwide colorectal cancer registry allows researchers to discover the effects of environmental exposures and lifestyle differences that other studies are too small to discern.

Researchers using data in the registries can also search for genetic factors that may play a role in vulnerability to colorectal cancer. And ultimately, researchers can analyze how environmental factors interact with genetic factors in colorectal cancer, which may lead to greater understanding about what causes colorectal cancer and how to prevent it.