1. You will have an opportunity to discuss the study with the study coordinator. If you are agreeable to participating, you will need to sign the study consent form.
2. We will ask your permission to obtain your medical records regarding your diagnosis of cancer.
3. We will ask you about your family history of cancer using a family history questionnaire. It is very helpful to learn as much information as possible about any other types of cancer as well as other relevant medical conditions in the family. This is helpful for genetic studies, but also allows a more accurate assessment of the family history of cancer. All participants will have the option to review their family history with a genetic counselor. Some participants may be referred for a clinical genetic assessment and/or genetic testing.
4. You will be asked to complete a study questionnaire about various environmental and lifestyle factors that may be associated with pancreas cancer. Collectively, the answers from a large number of patients and healthy controls will hopefully help us to understand some of the factors that influence the risk of developing pancreas cancer.
5. You will have the option to provide a sample for research. This may include a blood sample, a saliva sample, and/or a tissue sample (from a previous biopsy or surgical procedure). When possible, we will try to coordinate a blood sample with a regular clinic appointment at the treating clinic or hospital. For some patients, we will also ask their consent to obtain a tissue sample from the hospital where they had a previous biopsy or surgical procedure. On a research basis, these samples can be very useful to help us understand the genetics and the biology of pancreas cancer.
6. With the patient’s permission, we plan to invite healthy controls to participate in the study. Often this will be a healthy and unrelated individual living in the same household as the patient (such as a spouse). These individuals can be a good control group for research since they have a different genetic makeup and have similar lifestyles and environmental exposures.
7. For pancreas cancer patients who have a family history of pancreas cancer, we may ask to invite family members to participate. Where appropriate (and only with the patient’s permission), we will invite the brothers, sisters, parents, and/or children of the patients who were diagnosed with pancreas cancer in the family. These family members, if they are agreeable, will be asked to complete the same risk factor questionnaire and will be asked to provide a blood and/or saliva sample for research.
