Who are HGCR participants?

People who have a clinical or genetic diagnosis of a syndrome associated with a risk for gastrointestinal cancers or who have a family history of them may be eligible to participate. Examples may include: familial adenomatous polyposis (FAP), attenuated familial adenomatous polyposis (AFAP), lynch syndrome or hereditary non-polyposis colorectal cancer (HNPCC), peutz-jeghers syndrome, hyperplastic polyposis, juvenile polyposis syndrome, cowden syndrome, hereditary gastric cancer, familial pancreatitis, hereditary pancreatic cancer, etc.

What does being in the HGCR involve?

Participation in the registry involves some or all of the following:

• Completion of medical and family history questionnaires
• Providing a blood sample, cheek cell sample, or both
• Agreeing to have the registry contact you to update your study records
• Agreeing to be contacted by the registry about future research studies for which you may be eligible
• Sharing portions of your medical records related to your condition
• Sharing information and samples between sections of the High Risk Cancer Research Program
• Providing information to contact family members for family expansion efforts

For more information, including eligibility and participation requirements in the HGCR, please email us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or call us at (801-585-1936) or 1-877-422-6860 and we would be happy to discuss your interest in participating in the registry.