Pancreatic Cancer: Pancreatic Tumor Registry

In 2002, Memorial Sloan Kettering Cancer Center began a unique research initiative called the Pancreatic Tumor Registry to look for causes of pancreatic cancer in people with a family history of the disease. Data from the registry will also help to determine whether screening for pancreatic cancer in healthy people with a strong family history of pancreatic cancer is useful. By collecting and analyzing data from people with pancreatic cancer and their family members, our researchers are working to reveal new insights into the genetic, environmental, and lifestyle factors that increase a person’s risk of developing pancreatic cancer.

The goals of the 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 approximately 120 pancreatic cancer patients with a strong family history of the disease and 415 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 their children, have been associated with an increased risk of developing pancreatic cancer.

Who Can Participate in the Registry?

People who have multiple relatives with pancreatic cancer or have a familial genetic syndrome associated with the disease can participate in the Pancreatic Tumor Registry.

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

Why 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 are a family member of someone diagnosed with pancreatic cancer (and therefore have a higher risk of eventually developing the disease), joining the registry may reveal precancerous lesions or other early signs of pancreatic cancer. This early surveillance 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 to discuss possible inherited syndromes that may be related to cancer diagnoses in your family. You may also be offered genetic testing, depending on your family history. Results from genetic tests can help to determine your individual risk of developing pancreatic cancer or other cancers, and how often you should be screened.
Participating in the Pancreatic Cancer Registry is also an important way to make a valuable contribution to the fight against pancreatic cancer. The information learned from registry data holds the potential to improve care for people with pancreatic cancer 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 undergone 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 yet been diagnosed with pancreatic cancer, but are related to someone with the disease, you may be asked to come to Memorial Sloan Kettering for yearly imaging tests to look for precancerous lesions. If precancerous lesions are found, additional tests – such as endoscopic ultrasound or biopsy – may be performed.

How Can I Get More Information?

For more information and to see if you are eligible for this study, please tell us about your family’s history with pancreatic cancer using our online form. Once we receive the form, we will contact you regarding 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 Amethyst Saldia, Research Study Assistant, at 646-735-8194. You can also contact us by e-mail at FPCregistry@mskcc.org.