ENGAGE: Surveys to Assess Decision-Making on Genetic Counseling and Testing for Lynch Syndrome

https://www.facingourrisk.org/research-clinical-trials/study/416 /engage-surveys-to-assess-decision-making-on-genetic-counseling-and-testing-for-lynch-syndrome

Clinicaltrials.gov identifier:
NCT07106359 (https://clinicaltrials.gov/show/NCT07106359)

Surveys, Registries, Interviews
Clinical trial for untested individuals at risk for Lynch syndrome

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 Lynch syndrome decide about seeking genetic services, such as genetic counseling and testing. We are first recruiting individuals who have been tested for Lynch syndrome to help us identify their untested relatives to participate in the clinical trial. Untested relatives will be randomized into one of two groups and will complete 3 online surveys over 6 months.

What the Study Involves

This is a randomized clinical trial to see if our education materials help people at risk for Lynch syndrome decide about seeking out genetic services. Trial participants will be randomized 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 randomized 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

Click here to get started.

Lead Researcher

Haoyang Yan, PhD
University of Alabama at Birmingham (UAB), Department of Family and Community Medicine
[email protected]

This Study is Open To:

Eligibility:

Tested individuals must be:

Age 18 or older
English-speaking
Have had genetic testing for Lynch syndrome
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 Lynch syndrome based on genetic testing
Be potentially at risk for Lynch syndrome
Have not scheduled or had pre-test genetic counseling or genetic testing for Lynch syndrome
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 Lynch syndrome

Untested relatives must be:

Age 17 or younger
Non-English speaking
Not a blood relative of a person who was diagnosed with Lynch syndrome based on genetic testing
Have already scheduled or had pre-test genetic counseling or genetic testing for Lynch syndrome
Have been diagnosed with any cancer outside of a non-melanoma skin cancer

About FORCE

FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.