Around 1 in 10 (10%) of pancreatic cancer patients carry an inherited change (mutation) in a gene, which can increase the risk of certain cancers, including not only pancreatic cancer, but also breast, ovarian, and prostate cancers.
Relatives of patients with pancreatic cancer often don’t know that this mutation can be passed down through the family. This is why having information about genetic risk is important for family members. If someone does have an inherited risk, there may be options for early detection and/or more frequent screening (to look for cancer or pre-cancer).
Typically, a patient found to have a mutation in a gene that increases cancer risk is urged to tell their relatives to get genetic testing, too, to see if they do or do NOT share the mutation and associated cancer risk.
The GENERATE Study is being done to learn if giving people genetic information in different ways affects their decisions about whether to have genetic testing themselves.
Funding for this study is provided by the Lustgarten Foundation and Stand Up To Cancer’s- Lustgarten Foundation (The Pancreatic Cancer Collective).
The collaborators involved in the GENERATE Study are Dana-Farber Cancer Institute, Johns Hopkins University, Mayo Clinic, MD Anderson Cancer Center, and University of California, San Diego. Following are the principal investigators from each institution:
Dana-Farber Cancer Institute: Sapna Syngal, MD, MPH, Judy Garber, MD, MPH, Matthew Yurgelun, MD
Johns Hopkins University: Alison Klein, PhD, MHS, Michael Goggins, MBBCh, MD
Mayo Clinic: Gloria Petersen, PhD
MD Anderson Cancer Center: Anirban Maitra, MBBS, Florencia McAllister, MD
University of California, San Diego: Scott Lippman, MD, Lisa Madlensky, PhD, CGC, Andrew Lowy, MD, FACS
Download our list of support group resources for families affected by pancreatic cancer.