Focusing on Pancreatic Cancer Prevention - Lustgarten Foundation: Pancreatic Cancer Research

Focusing on Pancreatic Cancer Prevention

A Better Future For Families Impacted by Pancreatic Cancer

The GENERATE (GENetic Education, Risk Assessment, and TEsting) Study is designed for people who have a close relative with or without a known genetic mutation.. The goal of this study is to improve genetic testing and cancer prevention in family members of pancreatic cancer patients. If a family member does have an inherited risk, there may be options for preventing cancer or detecting it early at a curable stage via regular cancer screenings.

To be eligible for the GENERATE Study, participants must:

  • Have a first-degree relative* who has (or had) pancreatic cancer or a second-degree relative* who has (or had) pancreatic cancer and has a known genetic mutation
  • Be able to provide the genetic test report of the family member with a genetic mutation (if genetic testing has been done in the family)
  • Not have had pancreatic cancer
  • Not have had genetic testing or counseling for cancer risk before
  • Have a healthcare provider and be willing to share genetic test results with that provider and the GENERATE Study team
  • Be willing to complete a series of questionnaires for up to 15 months
  • Be age 18 or older
  • Have a United States mailing address
  • Have Internet access

Participants will complete the following:

  • Online education about genetic testing
  • Genetic testing from home, at no cost to participants, by mailing in a saliva sample
  • A series of four sets of questionnaires over 15 months

Study participants can speak with a genetic counselor before and after undergoing genetic testing. If a participant would like to meet with a genetic counselor in person, GENERATE Study sponsors can provide information about local genetic counseling and support services. The free genetic testing is conducted by Color Genomics (, a certified genetic testing company, to study 30 genes related to common cancers that can be passed down in a family.

This project is funded by the Pancreatic Cancer Collective, an initiative of the Lustgarten Foundation and Stand Up To Cancer. The GENERATE Study is being conducted by leading pancreatic cancer experts at Dana-Farber Cancer Institute; Johns Hopkins Kimmel Cancer Center; Mayo Clinic; MD Anderson Cancer Center; and UC San Diego Moores Cancer Center, although participants do not have to be patients at any of these centers to participate in GENERATE.

For more information about the GENERATE Study and to enroll, visit, call 617.582.9444 or 617.655.3498 between 9 a.m. – 5 p.m. EST, or email [email protected]. Additional information is available at (NCT03762590). Recruitment is now closed to individuals from pancreatic cancer families without a known familial mutation related to pancreatic cancer.

*First-degree relatives: parents, children and siblings

Second-degree relatives: uncles, aunts, nephews, nieces, grandparents, grandchildren and half-siblings

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