Who can join
To be eligible, you need to:
- 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 germline 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 recent genetic testing or counseling for cancer risk
- 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 U.S. mailing address
- Have access to the internet
What’s required
Participation in the GENERATE Study includes:
- Online education about genetic testing
- Genetic testing from home, at no cost to you (no need to travel to a clinical site) by mailing in a saliva sample
- Completion of a series of 4 sets of questionnaires over 15 months
Please note you will need an email address to receive important study information.
For more information on study requirements, check out the GENERATE Study timeline:
-
Eligibility
Complete eligibility form online
-
Verification
Call from study team to verify eligibility
(1-5 business days after eligibility form submission) -
Joining
- Review and sign consent (sent after call)
- Complete initial questionnaires (sent after consent is submitted)
-
Education
- Genetic education at home, online
- Complete follow-up questionnaires
-
Testing
Genetic testing, if you choose to do so
(~1 week after education) -
Questionnaires
Follow-up questionnaires
(3-4 months after education) -
Follow-up
Post-test follow-up
(after questionnaire submission) -
Questionnaires
Follow-up questionnaires
(15 months after education) -
Completion
GENERATE participation is finished
(after questionnaire submission)
Privacy information
Study data. Data for the GENERATE Study will be collected and managed using REDCap (Research Electronic Data Capture). REDCap is a secure, web-based application designed for capturing research data.
Genetic privacy laws. The Genetic Information Nondiscrimination Act (GINA) is a federal law, signed in 2008, that protects you from genetic discrimination in employment and health insurance.
GINA makes it illegal for your health insurer to use a genetic test result or family health history as a reason to deny you health insurance or decide cost for your health insurance. Your health insurer cannot consider family history or a genetic test result as pre-existing conditions for getting insurance.
In addition, employers cannot use your genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms.
While GINA prohibits employment and health insurance discrimination, it does not offer protection for life, disability, and long-term care insurance coverage. This protection varies from state to state.
For more information about GINA, please visit ginahelp.org/.
Resources
Download our list of support group resources for families affected by pancreatic cancer.
Please note, GENERATE is designed to study the benefits of education relating to genetic testing. No part of this study involves the provision of medical care to subjects. No individuals involved in the study, including the study investigators, the genetic counselors, and the study coordinators, will share with subjects any new diagnosis, any medical recommendation for treatment or therapy, or will provide medical care. If you have questions or concerns about a medical diagnosis or your clinical status, please address those topics directly with your primary care provider or other clinician who provides your medical care.