Actively Recruiting

Age: 18Years +
All Genders
ID06582914

Lynch Syndrome Integrative Epidemiology and Genetics (LINEAGE) Consortium Observational Study to Understand Cancer Risks and Gene Interactions in Lynch Syndrome

Led by University of Colorado, Denver · Updated on 2025-01-15

5000

Participants Needed

2

Research Sites

1578 weeks

Total Duration

On this page

Sponsors

U

University of Colorado, Denver

Lead Sponsor

U

University of Chicago

Collaborating Sponsor

AI-Summary

What this Trial Is About

Researchers are investigating Lynch Syndrome through the LINEAGE Consortium to improve the understanding and management of this genetic condition. The study aims to enhance knowledge about cancer risks, early detection, and prevention strategies for individuals with Lynch Syndrome by collecting comprehensive clinical and genetic data. This observational prospective cohort study focuses on individuals carrying genetic variants associated with Lynch Syndrome to better understand their cancer risk and outcomes. The study does not involve specific interventions but collects standardized clinical information, biospecimens, and genetic data from participants. It includes baseline and annual reviews of electronic health records, as well as surveys completed by participants and providers. Biosamples may be collected once or repeatedly from participants at participating centers to support research on Lynch Syndrome-related cancers. Participants will be followed over time with annual data collection to monitor health outcomes, including the incidence of colorectal cancer. Researchers will analyze clinical data, genetic information, and biospecimens to explore cancer risks, gene-environment interactions, and factors influencing disease progression. The study also supports collaborative research efforts by providing infrastructure for data sharing and grant applications, aiming to improve cancer prevention and early detection for Lynch Syndrome patients.

CONDITIONS

Official Title

Lynch Syndrome Integrative Epidemiology and Genetics

Who Can Participate

Age: 18Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Adults age over 18 years
  • Must have at least one variant of uncertain significance, pathogenic, or likely pathogenic variant in MLH1, MSH2, MSH6, PMS2, or EPCAM confirmed by genetic testing and ClinVar review
  • Individuals who are obligate carriers of a Lynch Syndrome pathogenic or likely pathogenic variant confirmed in the family
Not Eligible

You will not qualify if you...

  • Under 18 years of age

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 2 locations

1

University of Colorado

Aurora, Colorado, United States, 80045

Actively Recruiting

2

University of Chicago

Chicago, Illinois, United States, 60637

Not Yet Recruiting

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Research Team

S

Swati G Patel, MD, MS

S

Sonia Kupfer, MD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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Published Research Related To This Trial

Multiple endoscopic biopsies in research subjects: safety results from a National Institutes of Health series.

Michael D Yao, Erik C von Rosenvinge, Catherine Groden...

https://pubmed.ncbi.nlm.nih.gov/19136110

Cancer risks by gene, age, and gender in 6350 carriers of pathogenic mismatch repair variants: findings from the Prospective Lynch Syndrome Database.

Mev Dominguez-Valentin, Julian R Sampson, Toni T Seppälä...

https://pubmed.ncbi.nlm.nih.gov/31337882