The Colon Cancer Family Registry at Mayo Clinic is no longer enrolling new participants. Research work continues with existing participants and their families.
Here are commonly asked questions participants may have.
Will participating in the registry improve my health?
This study will not make your health better, nor is there any assurance that you will get any sort of test results from this study. This study does not provide health care services.
How is my confidentiality protected?
The identity of each participant in the registry is protected by using a unique identifier number. Only the Colon Cancer Family Registry study personnel know your identity. Your identity isn't shared with any researcher outside the registry. Information learned about you through this study does not become part of your medical record.
Access to your personal information is extremely limited and highly protected. Even if information you provided is used in studies that involve other medical institutions and even if your blood specimen is shared with researchers outside of Mayo Clinic, no one outside of the Mayo Clinic study group can know who you are.
All information is given a code number, and only the Mayo Clinic study group has the key to the code. No results are entered into your Mayo Clinic medical record, and no insurance company has any access to anything recorded or studied as part of this registry.
In addition, the federal Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits employers and health insurers from discriminating against individuals on the basis of their genetic information.
Will I find out the final results of the study?
The Colon Cancer Family Registry isn't intended to produce final study results about any particular individual.
However, if something potentially highly useful to you is discovered about you, you will be contacted to see if you choose to learn about this or not. For many people, no individually useful results will ever be found. In addition, any major findings will be published in the context of larger research reports.
How is the registry kept up to date?
When you originally enrolled in the Colon Cancer Family Registry, a family history was collected. Family histories can change through the years with births, deaths and new diagnoses. Participant updates are collected through phone calls and written questionnaires.
What happens to my blood and tissue samples?
When you agreed to participate in the registry, you were sent a blood kit, a consent form, an epidemiology questionnaire, and a medical authorization to obtain medical records and tumor samples (also called tissue blocks) from your cancer surgery. After your blood was drawn, it was sent to a Mayo Clinic laboratory for processing.
If you had a tumor removed at Mayo Clinic or elsewhere and gave written permission to access it, then the tumor was obtained from the tissue registry at Mayo Clinic and slides were made from that tumor for current and future studies.
If you had a tumor removed at another institution, the samples were sent to Mayo Clinic. Once the tumor samples were received, slides were made and the original samples were returned to the institution.
Do I receive genetic counseling or genetic testing?
The Colon Cancer Family Registry can't provide individualized health care advice, genetic counseling or genetic testing. The registry is not a substitute for consulting with a geneticist or having genetic testing done in a clinical laboratory.
Some amount of genetic analysis is done as part of specific projects within the registry. If results are thought to be of concern to you or your family, registry staff may provide some general genetic counseling over the phone in the context of telling you about your option of learning a research result, but only under very restrictive rules.
If you want to explore genetic testing, you must do that outside of this study. Registry staff may be able to help you locate a geneticist in your area.