Improving care for individuals with Lynch syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The LINEAGE Consortium aims to enhance the lives of individuals and families affected by Lynch syndrome through collaborative research. This observational study will establish a prospective cohort of patients with Lynch syndrome, collecting standardized clinical data and biosamples to investigate the epidemiology and genetic factors associated with the condition. The consortium will also support intervention trials focused on cancer prevention and early detection strategies for those at risk. By leveraging electronic health records and participant surveys, the study seeks to generate valuable insights into Lynch syndrome-related cancers.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* • Adults age over 18 years

  * Eligible patients must have at least one variant of uncertain significance (VUS), pathogenic or likely pathogenic variant (PV/LPV) in MLH1, MSH2, MSH6, PMS2, or EPCAM, which will be confirmed by genetic testing results (obtained as part of routine care) and a review of the variant in ClinVar (https://www.ncbi.nlm.nih.gov/clinvar/).
  * Individuals who are an obligate carrier of a LS PV/LPV that is confirmed in the family.

Exclusion Criteria:

* Age under 18

Where it's running

• University of Colorado
  Aurora, Colorado, United States Recruiting
• University of Chicago
  Chicago, Illinois, United States Not yet recruiting

Study contacts

• Study coordinator: Swati G Patel, MD, MS
• Email: swati.patel@cuanschutz.edu
• Phone: 3032170731

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Capsule camera screening of the small intestine for people with Lynch syndrome

  This project looks back at past small-bowel capsule endoscopy exams to see if they detect precancerous lesions or early cancer in people with Lynch syndrome.

  Recruiting Assistance Publique - Hôpitaux de Paris · Paris · NCT07472686

• Liquid biopsy and machine learning to detect early colorectal cancer, advanced adenomas, Lynch-related cancers, and residual disease

  This project will test a blood-based liquid biopsy that uses microRNA signals and machine learning to detect colorectal cancer, advanced adenomas, Lynch-associated cancers, and molecular residual disease in people who have a colonoscopy.

  Recruiting San Raffaele University · Milan, Lombardy and 3 other locations · NCT07450612

• Cutting down ultra-processed foods for people at high cancer risk

  This project tests whether using the Open Food Facts smartphone app alongside nutrition education helps adults at high risk of cancer eat fewer ultra-processed foods.

  Recruiting at 2 sites Gustave Roussy, Cancer Campus, Grand Paris · Avignon and 2 other locations · NCT07436312

• Menstrual cup for early detection of endometrial cancer in Lynch syndrome

  This project will test whether using a menstrual cup can collect uterine lining samples that help detect early endometrial cancer in menstruating people who carry Lynch syndrome gene changes.

  Recruiting Brigham and Women's Hospital · Boston, Massachusetts · NCT07220239

• Lower GI imaging with a tethered camera capsule

  This test tries a small camera capsule on a string that takes pictures of the lower gut without sedation for adults who are healthy or who have Lynch syndrome, Crohn's disease, or other inflammatory bowel diseases.

  Recruiting Massachusetts General Hospital · Boston, Massachusetts · NCT07219537

• See how common Muir-Torre syndrome is among people with Lynch syndrome

  This study tests how common Muir-Torre syndrome is in people with a confirmed Lynch syndrome.

  Recruiting Centre Hospitalier Universitaire de Nīmes · Nîmes, Gard · NCT07201012

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.