Lynch Syndrome

Lynch Perspectives

Lynch Syndrome (LS) is a cancer predisposition syndrome that is inherited due to specific gene mutations. When these gene mutations were first identified in families with many cancers, very little was known about optimal prevention. Since that time, research has been evolving to identify the best means of cancer prevention & screening

This project will evaluate the barriers and burdens of screening/prevention delivery for Lynch Syndrome carriers in BC. We are recruiting 15-20 participants who will be invited to participate in one-on-one interviews or a focus group discussion.

We are recruiting people who:

• Have a female reproductive system
• Have received a positive genetic test for Lynch Syndrome

Lynch-SCAN (Lynch Syndrome Carriers’ Uterine Cancer Health Assessment: Sampling and DNA-based Detection)

Lynch syndrome is an inherited cancer predisposition syndrome caused by specific gene mutations. Individuals with Lynch syndrome who have a uterus face over a 10 times greater risk of developing endometrial cancer compared to the general population. Some individuals have their uterus removed as a preventative measure, while those who still have their uterus may be offered annual transvaginal pelvic ultrasound testing and endometrial biopsies. However, the effectiveness of these tests is unproven, given they are time-consuming and invasive, resulting in low adherence to regular testing.

This project will evaluate if data collected from questionnaires and non-invasive biological tests (vaginal DNA and microbiome, pH) can be used to predict the risk of endometrial cancer in Lynch syndrome carriers in BC.

We are recruiting people who:

• Are carriers of Lynch syndrome confirmed by genetic testing
• Are aged over 30
• Have an intact uterus

Participation involves completing a health assessment questionnaire and up to three rounds of at-home sample collection.