What is expected of me if I decide to participate in the Registry?

Each person in your family who participates in the Registry will be expected to:

• Complete questionnaires on your family's history of cancer, your personal health history, and your dietary habits
• Contribute small samples of blood
• Answer a brief follow-up questionnaire each year
• Give permission to request medical records on your cancer diagnoses (if you have had cancer)
• Give permission to obtain samples of tumor tissue (if you have had cancer)
• Invite other relatives to join the Registry

What are the benefits of participating?

• You will be kept informed of new research findings through newsletters and seminars
• You will have the satisfaction of contributing to important studies that may help you and your family

Will I be told the results of any research conducted using the information I provide to the Registry?

Research and summaries of relevant clinical findings using Registry data and specimens will be available to you through the biannual newsletters and educational programs offered to Registry participants.

How is my privacy protected?

Your name will never be linked with the information or samples you provide. A code will be assigned and will be used on any information or samples provided to approved researchers. A complete description of the Registry's confidentiality measures is available here.