Overview

About the Hereditary Gastrointestinal Cancer Registry

About the Hereditary Gastrointestinal Cancer Registry

When several people in a family develop gastrointestinal (GI) cancers, genetic factors may be responsible. Many of these factors are not currently known. Hereditary cancer syndromes are unusual, but these families are at higher risk for developing cancer and can benefit from more screening and healthy behavior changes to prevent cancer.

The Hereditary Gastrointestinal Cancer Registry (HGCR) at Huntsman Cancer Institute is a resource for people who have a strong personal or family history of cancers of the GI system, including the stomach, small bowel, pancreas, colon, or rectum.

The HGCR is also a resource for researchers who want to learn more about inherited cancers and how GI diseases develop.

OUR GOALS

  • Better understanding of inherited risk factors and development of GI syndromes and cancers
  • Improve prevention, screening, diagnosis, and treatment for GI syndromes and cancers
  • Be a resource for enrolled participants, researchers, and health care providers

Who can participate?

People with a personal or family history of hereditary GI syndromes or cancers and their family members may be eligible to take part in the HGCR.

Many participants are from the western part of the United States with about half from Utah. We also have participants from the Midwest as well as southern and eastern states.

If you have a personal history of colon cancer before the age of 50 or family members with familial GI syndromes, contact us to learn more about the registry.

Why should I participate?

We hope the scientific knowledge gained from current and future studies will benefit participants, their families, and generations to come. People who participate in the HGCR help us in these efforts.

Participants also benefit from the following:

  • Referrals to clinical trials and research studies
  • Newsletters and educational information about inherited GI syndromes, cancer risks, and cancer prevention
  • Referrals to support groups and patient advocacy meetings
  • Guidance about screening recommendations

What will I be asked to do? 

  • Complete personal, medical, and family history questionnaires
  • Provide a blood or cheek-swab sample
  • Give permission to review parts of your medical records
  • Allow us to have tissues removed during surgery to study the genetics of familial cancer and syndromes

All information provided to the Registry is private, confidential, and highly secure.

Contact Us

For more information or to see if you are eligible to participate, please contact the clinical research coordinator.

Hereditary Gastrointestinal Cancer Registry
Huntsman Cancer Institute at the University of Utah
2000 Circle of Hope, Room 4529
Salt Lake City, UT 84112  
801-585-1936 or toll free: 1-877-422-6860
Fax: 801-585-5763
registry.coordinator@hci.utah.edu 

The information posted on this site is consistent with the research reviewed and approved by the University of Utah Institutional Review Board (IRB). However, the IRB has not reviewed all material posted on this site. Contact the IRB if you have questions regarding your rights as a research participant. Also contact the IRB if you have questions, complaints, or concerns which you do not feel you can discuss with the investigator. The University of Utah IRB may be reached by phone at 801-581-3655 or by email at irb@hsc.utah.edu.