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Lynch Syndrome Integrative Epidemiology and Genetics

RecruitingObservational study

Lynch Syndrome Integrative Epidemiology and Genetics (LINEAGE)

Who can join

Ages 18 and older · All sexes

Full eligibility criteria

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

About the study

The vision of the "Lynch syndrome INtegrative Epidemiology And GEnetics" (LINEAGE) Consortium is to collaboratively improve the lives and longevity of individuals and families with Lynch syndrome.

The mission of the LINEAGE Consortium is to collaboratively improve Lynch syndrome care through high-quality research. This consortium will provide intellectual and infrastructure support to facilitate development of research questions, collection of standardized data and biospecimens, support of grant applications, and generation of collaborative manuscripts.

Our aims are to:

I. Establish a prospective cohort of individuals with Lynch syndrome II. Collect standardized longitudinal clinical and biosample data to elucidate Lynch Syndrome epidemiology and gene-host interactions III. Promote intervention trials to improve cancer prevention and early detection in Lynch Syndrome

Sponsor: University of Colorado, Denver · Participants: 5,000 · Started: Oct 1, 2024

Contact the study team

Swati G Patel, MD, MS · Phone: 3032170731

Official record on ClinicalTrials.gov — NCT06582914

Locations in the U.S.

Colorado	University of Colorado, Aurora
Illinois	University of Chicago, Chicago (Not yet recruiting)

Conditions

Hereditary Nonpolyposis Colorectal Cancer

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.