Memorial Sloan Kettering’s Pancreatic Tumor Registry is researching the causes of pancreatic cancer in people with a family history of the disease.
We’re collecting and analyzing data from people with the disease and their family members. Our researchers are using this information to learn about factors that can raise your risk of developing pancreatic cancer. They include genetic, environmental, and lifestyle factors.
Goals of the Pancreatic Tumor Registry are to:
- Identify people who are most likely to be helped by screening with the latest imaging methods.
- Find biomarkers that could tell us there’s pancreatic cancer at an early stage. Biomarkers are measurable materials, such as proteins and genes.
- Develop better, targeted drugs for pancreatic cancer.
So far, the registry has enrolled more than 1,000 people with pancreatic cancer. We have also enrolled nearly 700 people who do not have the disease. But they’re at higher risk for pancreatic cancer because of family history or genetic factors.
The registry also includes people who have a family history of pancreatic cancer and a genetic syndrome. These genetic changes (mutations or variants) can be passed down from parents to children. They’re linked to a higher risk for pancreatic cancer.
Who can join the registry?
You can join the Pancreatic Tumor Registry if you have many relatives with pancreatic cancer or a familial genetic syndrome linked to the disease. For more information, see this protocol in our clinical trials database.
You do not need to be a patient at MSK, or related to a patient at MSK, to join the registry.
Why would I want to join the registry?
If you meet with us about treatment for pancreatic cancer, we may invite you and your family members to join the registry. This is voluntary. It’s your choice whether you want to join.
If someone related to you by blood has pancreatic cancer, you’re at a higher risk for getting it, too. After you join the registry, we may find precancerous lesions or other early signs of pancreatic cancer. This may give you treatment options while the cancer is at an earlier stage and not as hard to treat.
However, we do not know if the registry will be more successful at finding early-stage pancreatic cancers than standard diagnostic tests.
After you join the registry, we may refer you to a genetic counselor. You can talk with them about genetic syndromes that run in your family. These syndromes can be related to your family history of cancer.
We also may offer you genetic testing. Your test results can tell us about your individual risk for pancreatic cancer or other cancers. It can also help guide us about how often you should be screened.
Joining the registry is also an important way to help 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, we will ask you for a blood or saliva sample.
You may have had a biopsy or surgery for pancreatic cancer. If so, your doctors also may ask to include a tissue sample from the procedure in the registry.
You may be related to someone with pancreatic cancer but have not been diagnosed with the disease. We may ask you to come to MSK for imaging tests each year. We will look for precancerous lesions. If we find any, you may have more tests.
How can I get more information?
For more information and to see if you’re eligible for this study, please fill out our online form. It has questions about your family’s history with pancreatic cancer. Once we get your form, we will contact you about joining the registry.