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Epidemiology and Genomics Research Program

Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

Overview

Each of the PE-CGS U2C Research Centers have an Administrative Core and three units: the Participant Engagement Unit, the Genome Characterization Unit, and the Engagement Optimization Unit

The Participant Engagement and Cancer Genome Sequencing (PE-CGS) NetworkExternal Web Site Policy is part of the Cancer Moonshot℠ Initiative. The first of its kind, this collaborative effort between researchers and participants will lead to new discoveries in cancer genomics.

Research to Engage Participants and Improve Cancer Prevention, Care, and Outcomes

Despite the successes of research into the genomic alterations in tumors, including findings from The Cancer Genome Atlas (TCGA), significant research gaps remain.

One strategy to address these research gaps is through direct participant engagement. Participant engagement includes a bi-directional and mutually beneficial interaction between participants, their communities, and researchers, where participants are included as an integral part of all phases of the research process. The PE-CGS Network will promote and support direct engagement of cancer patients and post-treatment cancer survivors as participants in an expansion of cancer genomic sequencing. Uniquely, as part of the PE-CGS network, participants and their communities have been involved since the inception and these partnerships will continue throughout the length of the network. In particular, the return of genomic sequencing results to participants, which in some cases could drive treatment decisions, is a unique way the network will engage participants.

The PE-CGS Network will function as a collaborative network to address common issues, share best practices and lessons learned, and utilize common methods where appropriate.

The overall purpose of the PE-CGS Network is twofold:

  • To promote and support direct engagement of cancer patients and post-treatment cancer survivors as participants in cancer research; and
  • To use such approaches for rigorous cancer genome sequencing programs addressing important knowledge gaps in the genomic characterizations of tumors in areas including:
    • Rare cancers or rare cancer subsets,
    • Highly lethal cancers,
    • Cancers with an early age of onset,
    • Cancers with high disparities in incidence and/or mortality, or
    • Cancers in understudied populations.

Benefits for Multiple Communities

The PE-CGS network aims to promote and support direct engagement of diverse and underrepresented cancer patients and post-treatment cancer survivors as participants in cancer research. Through this network, we will:

  • Determine best practices for engaging and communicating with participants, while also responding to participant preferences in genomics research.
  • Improve understanding of the molecular changes associated with cancer and increase knowledge about cancer across diverse patient populations.

The scientific insights generated by these efforts could be applied to opportunities for cancer prevention, improvement of methods of cancer diagnosis, or development of new cancer therapies.

Learn more at the PE-CGS Network website: https://pe-cgs.orgExternal Web Site Policy.

Visit cancer.gov for information on all projects of the “Direct Patient Engagement Network” research initiative, including PE-CGS.

Currently Funded Projects

The PE-CGS Network is made up of one Coordinating Center and multiple Research Centers. Each Research Center has an Administrative Core and three units: the Participant Engagement Unit, the Genome Characterization Unit, and the Engagement Optimization Unit.

Research Center Cancer Focus Population Focus
Count Me In PE-CGS CenterExternal Web Site Policy
Broad Institute, Dana-Farber Cancer Institute, Boston Children’s Hospital
Leiomyosarcoma, osteosarcoma Children, adults
Engagement of American Indians of Southwestern Tribal Nations in Cancer Genome SequencingExternal Web Site Policy
University of New Mexico, the Mayo Clinic, the Translational Genomics Research Institute (TGen), Black Hills Center for American Indian Health
Disparities cancers (gastrointestinal, hepatobiliary, genitourinary, and hormone dependent) American Indians of Southwestern Tribal Nations
OPTimizing engageMent in Discovery of Molecular Evolution of Low Grade Glioma (OPTIMUM)External Web Site Policy
Yale University, University of Colorado, Jackson Laboratory for Genomic Medicine, Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center
Low-grade glioma Young to middle-aged adults
Center for Optimization of Participant Engagement for Cancer Characterization (COPECC)External Web Site Policy
University of Southern California
Colorectal cancer Hispanics/Latinos
WU-PE-CGSExternal Web Site Policy
Washington University in St. Louis
Multiple myeloma, cholangiocarcinoma, colorectal cancer Adults with cholangiocarcinoma, Black Americans under age 65 with colorectal cancer, Black Americans with multiple myeloma
PE-CGS Coordinating CenterExternal Web Site Policy at The Ohio State University provides administrative and scientific support to the network’s researchers and participants.

Scientific Contacts

Please direct all inquiries about the network to Leah E. Mechanic at mechanil@mail.nih.gov.

Leah E. Mechanic, PhD, MPH
Program Director
Genomic Epidemiology Branch
Epidemiology and Genomics Research Program, DCCPS

Madison Behm, MPH
Cancer Research Training Award Fellow
Genomic Epidemiology Branch
Epidemiology and Genomics Research Program, DCCPS

Kelly K. Filipski, PhD, MPH
Program Director
Clinical and Translational Epidemiology Branch
Epidemiology and Genomics Research Program, DCCPS

Elizabeth M. Gillanders, PhD
Branch Chief
Genomic Epidemiology Branch
Epidemiology and Genomics Research Program, DCCPS

Rachel Hanisch, PhD, MPH
Program Director
Genomic Epidemiology Branch
Epidemiology and Genomics Research Program, DCCPS

Audrey Wellons, MPH
Communications Specialist
Office of the Associate Director
Epidemiology and Genomics Research Program, DCCPS