Pancreatic Disease Registry and Biorepository

Participation is voluntary. We hope you will participate because you fall into one of the following categories of people needed to identify a pancreatic disease biomarker:

• Patients with pancreatic disease (such as tumors or cysts, pancreatitis, diabetes)
• People or family members at risk for pancreatic disease
• Healthy people without pancreatic disease

• Participation in the research study will not affect your medical care.
• We will review the study and ask you to sign an informed consent form which describes the study in greater detail.
• Answer questions about yourself and your medical history.
• Allow us to review your medical record for information about your medical history.
• Provide samples of blood, urine, and saliva
• Give us permission to store information about you, your medical care, your biological samples, and diagnostic imaging performed during your standard medical care.
• If you have a pancreatic disease, we will contact you during future visits to your doctor where we will update your health information and ask you to provide blood, urine, and saliva samples. We will coordinate future visits with your standard medical care whenever possible.
• Allow us to contact you about participating in future research studies.

• Even though you will not receive any direct benefit from this study, your participation may lead to advancements which will help others in the future.
• We cannot share any results from future research studies performed with your donated samples.

• Results from these research studies will not go in your medical record.
• All data collected during this study will be kept in a password protected, secure database.
• There is no PHI on the samples that we collect and store for research.
• Access to your information will be limited to researchers and collaborators (inside and outside of BIDMC) who require access for research or compliance and monitoring purposes.
• Information shared about you outside of BIDMC will be strictly limited and tightly controlled.

• You will not be identified in publications resulting from this research study.

• Pain or bruising at the site of the blood draw, and rarely infection.
• Your personal information might be compromised. We have secure programs and procedures in place to protect your personal information. We will do our best to make sure that the personal information used for this study will be kept private. However, we cannot guarantee total privacy.

• You will not be charged for any procedures or tests performed for research purposes. Our collection of your samples and health information will not create costs to you or your insurance company

You may decide not to participate. This decision will not affect your medical care or cause you to lose any benefits.

If you choose to participate, you have the right to leave the study at any time. You have the right to be informed of new information that may affect your willingness to stay in this study. The investigators will contact you with this information if applicable.

To maintain your confidentiality, the results of these research studies will not appear in your medical record.