Frequently Asked Questions
The first step is to enroll in the registry online and complete the questionnaire. You will be asked to provide information regarding demographics, medical history, genetic testing, family history, and epidemiologic data. You have the right to refuse any question. After you have enrolled, our research staff will contact you to access medical records and to coordinate the donation of tissue, blood, and/or saliva samples. Allowing access to medical records and stored tissue samples is as easy as signing a form. Our research staff is available and happy to assist you at any point throughout the process.
Genome sequencing of tumor DNA
Having access to your tumor tissues, we can determine mutations in the genome of the tumor that are specific to you and understand how they affect cancer growth and response to treatment.
Blood samples allow us to detect and quantify cancer mutations from circulating tumor DNA within the plasma of whole blood.
Genome sequencing of normal DNA
Normal cells derived from blood and saliva samples allow us to determine variants that may have been inherited and learn how they can predispose you to cancer.
If you are a gastric cancer patient, we would like to obtain a sample of your tumor from a previous surgery and a small vial of blood. This would not require an additional appointment; the blood vial can be drawn at the time of your regular labs. If you grant us permission, we will contact the hospital where you had your surgery and request a fixed tissue sample.
If you have a family history of gastric cancer, or have a known mutation in your CDH-1 gene, we would like to obtain a saliva sample. This is an easy, non-invasive way to donate DNA that can be done at home.
Both the blood collection and saliva collection kits would be sent to your mailing address and include instructions on how to complete the kit as well as a prepaid return label.
The results of the study of your samples from this project will be used for research purposes only, and individual results will not be shared.
Data from the questionnaire will be stored in REDCap, a secure, web-based application created by Vanderbilt University and used at many research institutions across the country. The data is stored behind Stanford’s HIPAA-safe firewall.
Samples of tissue, blood, and saliva will be stripped of any identifying information once received in the research lab and stored under a unique identifier. Information obtained from your samples may be published, but no identifying information will be revealed.
If you have completed your enrollment in the registry and there is a change in your health status or that of a family member—for example if there is a new diagnosis of cancer in a close family member—we would like to update your record with that information. Please email the research team at email@example.com to receive your unique Return Code.
As the Gastric Cancer Registry is an observational research study and not a clinical trial, participants will not receive any treatment. Joining the registry will not affect your medical care in any way.