CORE Family Studies
The Colon Cancer Family Registry Cohort (CCFRC) collects biological specimens, or biospecimens, in order to better understand the biological and genetic factors associated with colorectal cancer. Each sample is important, because it is unique to the person who donated it. We collect samples of blood, saliva and colon cancer tissue from three groups of study participants:
Participation from people with and without cancer is critical to our research. This variety allows us to compare characteristics of one group to those of others. It also allows us to identify biologically-based patterns within families. Such diversity is one of the reasons our biospecimen resource is so valuable for colorectal cancer research.
Many people in the study are asked to donate a blood or saliva sample. Both methods have minimal risk for our participants and are very valuable to the research.
Participants have three options when donating a blood sample:
If you choose a clinic or doctor’s office, we will mail you a donation kit which you take to your blood draw appointment. The clinic or office will mail the sample kit back to us.
If you would prefer a clinic blood draw, we will identify clinics that will facilitate the blood draw, and confirm the clinic location with you.Saliva samples are a great option for two of our participant groups:
Saliva samples are a great option for two of our participant groups:
The saliva sample kit requires the donor to spit into a container, and then mail it back using the provided materials.
After surgeries to remove cancer, medical institutions are required to keep and preserve the tissue. If participants are comfortable with the request, we ask them to sign a consent form to give us formal permission to have access to these samples. This permission also allows us to receive the corresponding pathology report (a specific medical record that describes the sample’s characteristics and the pathologist’s diagnosis).
The consent form that the participant signs for tissue is also a consent form for additional medical records. This form has an “opt out” option for all sections, so you have control over the type of medical records to which you grant us access.
Samples are locked and stored indefinitely at the Fred Hutchinson Cancer Research Center or with one of our research collaborators. The CCFRC is part of an international registry cohort, which means that we collect these samples to make them available to other scientists conducting colorectal cancer-related research.
To protect the rights of our study participants, outside researchers must first receive approval from CCFRC scientists (to confirm the validity of a project) and our internal review board (IRB). If you donate or grant access to any biospecimens to the CCFRC, it is important that you are first comfortable with the idea that these samples could potentially be used for other studies that contribute to our central goal of advancing colorectal cancer research.
We take the greatest possible caution in protecting your rights to confidentiality as a study participant. Samples are de-identified, meaning personal information such as name, address, phone number, etc. are never attached to samples. Our research partners never have access to your personal information.
The CCFRC also conducts limited biospecimens testing. If these laboratory examinations reveal any results that could affect your healthcare decisions, we give you the opportunity to learn this information in a gradual process:
Because genetic testing results can have implications for your healthcare decisions, some people opt out of learning their results. Our genetic counselor offers the study participant multiple opportunities to change his or her mind during the notification process.
For additional questions about blood or saliva sample donation, consent forms, or confidentiality, please see our FAQ page. If you have further questions after checking the FAQ page, please contact us directly.
If you are undergoing genetic counseling, and the counselor or geneticist asks which tests the CCFRC may have done on your samples, you can find that information in Genetic Testing of CCFRC Biospecimens.