ENGAGE: Surveys to Assess Decision-Making on Genetic Counseling and Testing for Lynch Syndrome
Surveys, Registries, Interviews
Clinical trial for untested individuals at risk for Lynch syndrome
Clinicaltrials.gov identifier:NCT07106359
Study Contact Information:
Please contact the study coordinator, Kaylee Burgan, at [email protected] or [email protected]
About the Study
We are conducting a clinical trial to see if our education materials help people at risk for decide about seeking genetic services, such as genetic counseling and testing. We are first recruiting individuals who have been tested for to help us identify their untested relatives to participate in the clinical trial. Untested relatives will be into one of two groups and will complete 3 online surveys over 6 months.
This Study is Open To:
Eligibility:
Tested individuals must be:
- Age 18 or older
- English-speaking
- Have had genetic testing for
- Do not have a condition that would interfere with their ability to provide informed consent and complete study activities
Untested relatives must be:
- Age 18 or older
- English-speaking
- Be a blood relative of a person who was diagnosed with based on genetic testing
- Be potentially at risk for
- Have not scheduled or had pre-test genetic counseling or genetic testing for
- Have not been diagnosed with any cancer outside of a non-melanoma skin cancer
- Do not have a condition that would interfere with their ability to provide informed consent and complete study activities
This Study is NOT Open To:
Exclusions:
Tested individuals:
- Age 17 or younger
- Non-English speaking
- Have NOT had genetic testing for
Untested relatives must be:
- Age 17 or younger
- Non-English speaking
- Not a blood relative of a person who was diagnosed with based on genetic testing
- Have already scheduled or had pre-test genetic counseling or genetic testing for
- Have been diagnosed with any cancer outside of a non-melanoma skin cancer
What the Study Involves
This is a to see if our education materials help people at risk for decide about seeking out genetic services. Trial participants will be into one of two groups: one group will receive an information letter, and the other group will receive an information letter and a booklet.
We need tested individuals to help us identify their eligible relatives to participate in the trial.
Tested individuals will:
- Complete a brief phone call to confirm eligibility and identify eligible relatives
- Fill out a form to share your relatives’ contact information
- Complete a brief online survey
- Receive $30 for their participation
Untested relatives will:
- Complete a brief phone call to screen and confirm eligibility
- Be to one of two groups
- Review materials assigned to their study group
- Complete three 15-minute online surveys over the span of 6 months
- Complete an optional 15-minute virtual exit interview
- Receive up to $175 for their participation
Lead Researcher
Haoyang Yan, PhD
University of Alabama at Birmingham (UAB), Department of Family and Community Medicine
[email protected]
Study Contact Information:
Please contact the study coordinator, Kaylee Burgan, at [email protected] or [email protected]
Surveys, Registries, Interviews
Clinical trial for untested individuals at risk for Lynch syndrome
Clinicaltrials.gov identifier:NCT07106359
Study Contact Information:
Please contact the study coordinator, Kaylee Burgan, at [email protected] or [email protected]