This is an observational study called LINEAGE (Lynch syndrome INtegrative Epidemiology And GEnetics) that aims to improve the lives of individuals and families with Lynch syndrome. Researchers will collect health information and possibly biological samples from people with Lynch syndrome to better understand the condition and how it affects cancer risk. You may be able to join if you are an adult over 18 years old and have a specific genetic change (variant of uncertain significance (VUS), pathogenic or likely pathogenic variant (PV/LPV)) in certain genes (MLH1, MSH2, MSH6, PMS2, or EPCAM) related to Lynch syndrome. The study will track how many people develop colorectal cancer over 40 years to understand the condition better. The study plans to enroll 5000 participants, but its current recruitment status is unclear.

Study design

This is an observational study that plans to enroll 5000 participants. It is a prospective cohort study, meaning it will follow participants over time.

What's involved

Participants will have baseline and annual electronic health record (EHR) abstraction, and complete electronic participant and provider surveys. The study may also collect single or serial biosamples.

Compensation

Not stated in the trial record.

Follow-up

Participants will be followed to measure colorectal cancer incidence at 40 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.