Familial Pancreatic Tumor Registry

Memorial Sloan Kettering’s Familial Pancreatic Tumor Registry is researching the causes of pancreatic cancer in people with a family history of the disease.

We are collecting and analyzing data from people with pancreatic cancer and their family members. Our researchers are using this information to find out more about the genetic, environmental, and lifestyle factors that increase a person’s risk of developing the disease.

Goals of the Familial Pancreatic Tumor Registry are to:

  • identify people who are most likely to benefit from screening with advanced imaging techniques
  • find biomarkers that could indicate the presence of pancreatic cancer at an early stage
  • develop more-effective, targeted medications for pancreatic cancer

To date, the registry has enrolled more than 100 pancreatic cancer patients with a strong family history of the disease. We have also enrolled more than 400 unaffected people who are at higher risk because of family history or genetic factors.

The registry also includes people with a family history of pancreatic cancer who have a previously identified genetic syndrome. These genetic mutations, which can be passed from parents to children, have been associated with an increased risk of developing pancreatic cancer.

Who can participate in the registry?

You can participate in the Familial Pancreatic Tumor Registry if you have multiple relatives with pancreatic cancer or a familial genetic syndrome associated with the disease.

You do not need to be a patient or be related to a patient at MSK to take part in the registry.

Why would I want to participate in the registry?

If you meet with one of our doctors about receiving treatment for pancreatic cancer, you and your family members may be invited to join the registry. There is no obligation for you to do so, however.

If you have a family member who has been diagnosed with pancreatic cancer, you  have a higher risk of eventually developing the disease yourself. Joining the registry may reveal precancerous lesions or other early signs of pancreatic cancer. This may give you treatment options before the cancer becomes more advanced and more difficult to treat. However, we do not know whether the registry will be more successful than standard diagnostic approaches in finding early-stage pancreatic cancers.

Joining the registry will give you the opportunity to meet with a genetic counselor. Together, you can discuss possible syndromes that run in your family that may be related to your family history of cancer. You may also be offered genetic testing. Your results can help determine your individual risk of developing pancreatic cancer or other cancers. It can also help establish how often you should be screened.

Participating in the registry is also an important way to contribute to the fight against pancreatic cancer. The information we learn from registry data could improve care for people with this disease in the future.

What is involved if I join?

If you decide to join the registry, you will be asked to submit a blood or saliva sample. If you have already had a biopsy or surgery for pancreatic cancer, your doctors may also ask to include a tissue sample from the procedure in the registry.

If you have not been diagnosed with pancreatic cancer but are related to someone who has the disease, you may be asked to come to MSK for yearly imaging tests to look for precancerous lesions. If we find precancerous lesions, we may perform additional tests.

How can I get more information?

For more information and to see if you are eligible for this study, please fill out our online form. It contains questions about your family’s history with pancreatic cancer. Once we receive the form, we will contact you about your participation in the registry.

If you would prefer to talk to someone, please contact Robert C. Kurtz, Principal Investigator, at 212-639-7620, or Pamela Nunes, Research Study Assistant, at 646-888-8319. You can also contact us by email at FPCregistry@mskcc.org.