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Background <p>The Lynch syndrome INtegrative Epidemiology And GEnetics (LINEAGE) consortium was established to address gaps in understanding genotype-specific cancer risks and risk-modifiers in contemporary North American Lynch syndrome (LS) populations. LINEAGE is a multi-center, longitudinal cohort to systematically collect data on risk factors, adherence to care, quality of surveillance, and patient-, provider-, and system-level factors associated with incident LS-associated cancers.</p> Methods <p>LINEAGE recruits individuals with confirmed pathogenic or likely pathogenic variants in LS-associated genes from participating institutions. Data includes retrospective and prospective collection, encompassing clinical abstraction (demographics, surgical history, endoscopic data, treatments), patient-reported surveys (behavioral/lifestyle factors, quality of life, procedures), endoscopist-level data, and biosample metadata. A standardized REDCap database, data harmonization protocols, and a virtual biobank support reproducibility and linkage of clinical data and biosamples. Rigorous quality assurance/quality control processes are embedded for data integrity.</p> Results <p>Participating centers will contribute data to determine gene-specific risks, and gene-environment interactions for Lynch-associated, and other cancers. We will evaluate associations with exposure to, and quality of cancer risk-reduction care, including endoscopic surveillance, risk-reduction surgery, and chemoprevention. The inclusion of provider-level variables, such as endoscopist training and experience, enables unique research into modifiers of post-endoscopy cancer risk. The linked biosample resources will further facilitate mechanistic studies and biomarker discovery.</p> Conclusions <p>LINEAGE provides a robust platform for advancing LS research by integration of clinical, pathological, epidemiological and genetic data across institutions. Its standardized, collaborative framework enhances the validity and generalizability of risk estimates that will guide decision-making and policy for surveillance to ultimately reduce morbidity and mortality for individuals with Lynch syndrome.</p>

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Lynch syndrome integrative epidemiology and genetics (LINEAGE): rationale for cohort design

  • 期刊论文

  • 发表日期：

    2026年5月6日

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  • Swati G. Patel,
  • Holli A. Loomans-Kropp,
  • Zachariah H. Foda,
  • Bryson W. Katona,
  • Suzi Birz,
  • Carol A. Burke,
  • Jordan Clawson,
  • Brian Furner,
  • Camille Hochheimer,
  • Elizabeth Magnan,
  • Luigi Ricciardiello,
  • Harminder Singh,
  • Samuel Volchenboum,
  • Michael Watkins,
  • Timothy Yen,
  • Mohammad Abbass,
  • Nicholas J. Bartell,
  • Beth Dudley,
  • Luke Engelking,
  • Jose Guillem,
  • Robert Hollis,
  • Gregory Idos,
  • Blake A. Jones,
  • Priyanka Kanth,
  • Fay Kastrinos,
  • Dan Li,
  • Aimee L. Lucas,
  • Gautam N. Mankaney,
  • Jennifer K. Maratt,
  • Danielle Marino,
  • Joshua Melson,
  • Long H. Nguyen,
  • Kavya M. Reddy,
  • Kasmintan A. Schrader,
  • Rachel Silva-Smith,
  • Aparajita Singh,
  • Peter P. Stanich,
  • Elena M. Stoffel,
  • Sapna Syngal,
  • Jennifer M. Weiss,
  • Matthew B. Yurgelun,
  • Dana Zakalik,
  • Samir Gupta,
  • Ajay Bansal,
  • Sonia S. Kupfer,
  • Lisen Axell,
  • Randall Brand,
  • Andrew Chan,
  • Allison DePersia,
  • Minh Do,
  • Christine Drogan,
  • Sarah Ertan,
  • Ophir Gilad,
  • Heather Hampel,
  • Colin Hensen,
  • Kimberly Hilfrank,
  • Sabrina Ho,
  • Yasmin Kamal,
  • Eve Karloski,
  • Emma Keel,
  • Christina Kim,
  • Minsub Lee,
  • Elana Levinson,
  • Mei Li,
  • Anne Lincoln,
  • Jessica Long,
  • Tyler Peikes,
  • Sara Pirzadeh-Miller,
  • Maegan Roberts,
  • Heidi Rothenmund,
  • Sheila Rustgi,
  • Sohini Samaddar,
  • Daniel Sussman,
  • Mehul Trivedi,
  • Chinedu Ukaegbu,
  • Ji Yoon Yoon,
  • Dana Zalkin,
  • Andrew Zarker

摘要

Background

The Lynch syndrome INtegrative Epidemiology And GEnetics (LINEAGE) consortium was established to address gaps in understanding genotype-specific cancer risks and risk-modifiers in contemporary North American Lynch syndrome (LS) populations. LINEAGE is a multi-center, longitudinal cohort to systematically collect data on risk factors, adherence to care, quality of surveillance, and patient-, provider-, and system-level factors associated with incident LS-associated cancers.

Methods

LINEAGE recruits individuals with confirmed pathogenic or likely pathogenic variants in LS-associated genes from participating institutions. Data includes retrospective and prospective collection, encompassing clinical abstraction (demographics, surgical history, endoscopic data, treatments), patient-reported surveys (behavioral/lifestyle factors, quality of life, procedures), endoscopist-level data, and biosample metadata. A standardized REDCap database, data harmonization protocols, and a virtual biobank support reproducibility and linkage of clinical data and biosamples. Rigorous quality assurance/quality control processes are embedded for data integrity.

Results

Participating centers will contribute data to determine gene-specific risks, and gene-environment interactions for Lynch-associated, and other cancers. We will evaluate associations with exposure to, and quality of cancer risk-reduction care, including endoscopic surveillance, risk-reduction surgery, and chemoprevention. The inclusion of provider-level variables, such as endoscopist training and experience, enables unique research into modifiers of post-endoscopy cancer risk. The linked biosample resources will further facilitate mechanistic studies and biomarker discovery.

Conclusions

LINEAGE provides a robust platform for advancing LS research by integration of clinical, pathological, epidemiological and genetic data across institutions. Its standardized, collaborative framework enhances the validity and generalizability of risk estimates that will guide decision-making and policy for surveillance to ultimately reduce morbidity and mortality for individuals with Lynch syndrome.