How are my samples and data being used?
The CCFR uses the samples and information you provide to learn more about colorectal cancer — what causes it and how best to treat and prevent it. Questionnaire data, medical records and pathology reports related to cancer diagnoses and treatment are analyzed. Some of the tests on saliva and tissue will include analyses of DNA. DNA comes from cells in the body and contains genetic information specific to an individual. The goal of these analyses is to observe patterns of behaviors, DNA, medical information, and treatment options that lead to discoveries such as these.
All information are stored in a data repository. Before any information is stored in the repository, all identifiers (names, addresses, date of birth etc) are removed so they can be safely shared with researchers. Some of these repositories are controlled-access internet repositories maintained by the National Institutes of Health. Read more about how we protect your privacy here
Will I be contacted again for future research studies?
The CCFR is currently in its sixth phase of funding spanning over 25 years! We aim to invite you to participate roughly every 5 years by completing a survey. Your site may also contact you to see if you are interested in participating in other relevant research studies.
If I have a genetic test, will it affect my ability to get life insurance?
In short, it depends! Each country/state may have different rules and regulations regarding genetic testing for research and insurance. We encourage you to contact your site study manager if you have any questions or concerns about genetic testing and its effects on insurance.
Why is my participation relevant when I’m a non-biological family member?
We are interested in learning more about the familial (genetic) and non-familial (for example, lifestyle habits) risk factors for colorectal cancer as well as factors that may be protective against developing colorectal cancer. To do this, we need three groups of individuals to participate:
- Individuals who have had a diagnosis of colorectal cancer
- Their family members (with and without a history of colorectal cancer)
- Unrelated individuals who have not had colorectal cancer.
Just as studying people with colorectal cancer is obviously important to learn more about what causes colorectal cancer, studying people without colorectal cancer is important in identifying protective factors.
Why do I need to be involved if I haven’t had bowel cancer and/or don’t carry the gene?
That’s great. However, only about 5% of colorectal cancers have a known inherited genetic predisposition, thus the vast majority of these cancers are not familial and may be preventable by modifying environmental and lifestyle risk factors. To advance our understanding of non-familial risk factors, we need to study and compare individuals with and without bowel cancer as well as individuals with and without a gene mutation. Your unique history and characteristics may help us learn more about factors that may be protective against colorectal cancer.
Why do we need to be involved when we have had no further bowel cancer in our family?
Each Colon Cancer Family Registry family and study participant is unique and may help us uncover new factors that prevent bowel cancer. One of the most classic study designs is a case-control study where individuals with a disease/condition are compared to individuals without a disease/condition. Studying individuals and families without a disease is as important as studying those with a disease to identify factors that may lead to the disease or protect against it.
I’ve been doing this for years and nothing changes, even the questions. Why should I do this survey and what exactly are you looking for?
Bowel cancer remains the 2nd most common cancer, so we have more work to do. One of the strengths of a longitudinal study is that the strength and validity of the study data improves with each new data collection. Another is that it allows researchers to establish sequences of events and cause-and-effect relationships.