The Hereditary Gastrointestinal Cancer Registry (HGCR) helps individuals and family members who are at risk of developing gastrointestinal (GI) cancers, as well as those who have or are at-risk of developing a hereditary GI syndrome.
The HGCR is a resource for researchers who want to learn more about inherited cancers and how GI diseases develop. As we better understand these diseases, the HGCR intends to apply that knowledge in the community at large, working toward prevention and early detection.
We hope the scientific knowledge gained from future studies using the Registry will be of benefit to you, your relatives, future generations and families like yours.
The long-term goal of the HGCR is to decrease the incidence and mortality of GI cancer by:
- Identifying genetic risk groups through screening and intervention.
- Investigating key cell pathways of colon carcinogenesis and adenocarcinoma in order to identify molecular targets that would be useful for prevention and treatment.
Primary functions of the HGCR:
- To better define the molecular and clinical characteristics of inherited predisposition to cancers of the digestive system.
- To be a research resource for researchers and study participants.
- To be an educational resource for study participants and healthcare providers.
- To provide long-term tracking of high-risk individuals to assess risk and outcomes.
- To provide aid in clinical management. Symptoms and management outcomes will be tracked, allowing researchers and clinicians the resource of viewing long-term results on participants with many syndromes and applying used procedures and protocols to current patients within their clinical practices. Utilizing this research Registry for clinical use is in the form of returning information to subjects.
- To educate study participants through clinical recommendations as they become apparent through Registry-research.
- To keep study participants informed of new information available to them and their families, thus facilitating development for future usage in family expansion efforts.
- To obtain blood and other tissue samples to study the genetics of the development of cancer, syndromes, polyps, and related cancers as well as the causes, diagnosis, prevention and treatment of inherited cancer conditions.