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Epidemiology and Genomics Research Program

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

Overview

The PE-CGS Network is made up of one Coordinating Center and multiple Research Centers

The Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network 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://pecgs.orgExternal Web Site Policy.

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.

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 USC Center for Optimization of Participant Engagement for Cancer Characterization (COPECC)

  • Institution: University of Southern California
  • Principal Investigators: John Carpten; Heinz-Josef Lenz
  • Description: This Research Center, led by investigators from the University of Southern California, will focus on optimizing the engagement of Hispanic/Latinos in colorectal cancer (CRC) genomic characterization research studies to promote best practices for engaging these underserved populations and improve overall outcomes for CRC among Hispanic/Latinos.

OPTimIzing engageMent in discovery of molecular evolution of low grade glioma (OPTIMUM)

  • Institution: Yale University; University of Colorado Denver; The Jackson Laboratory for Genomic Medicine
  • Principal Investigators: Elizabeth Claus; Bethany Kwan; Roeland Verhaak
  • Description: The optimal clinical management of low grade glioma (LGG)—a malignant tumor of the brain and a uniformly fatal disease of young adults—remains unknown. Led by investigators at Yale University, University of Colorado Denver, and The Jackson Laboratory for Genomic Medicine, this project will engage and construct a community of 500 LGG patients to develop a comprehensive genomic characterization of the evolution from primary LGG to recurrence.

Washington University Participant Engagement and Cancer Genomic Sequencing Center (WU-PE-CGS)

  • Institution: Washington University
  • Principal Investigators: Graham Colditz; Li Ding; Bettina Drake; Ryan Fields
  • Description: Steered by investigators from Washington University, this project will build a rigorous scientific evidence base for approaches to direct engagement of cancer patients and post-treatment cancer survivors as participants in cancer research. The focus is on rare and understudied cancer populations with significant disparities, including cholangiocarcinoma, multiple myeloma in African Americans, and colorectal cancer under age 50 in African Americans.

Count Me In: Partnering with Patients to Define the Clinical and Genomic Landscape of Rare Aggressive Sarcomas in Children and Adults

  • Institution: Broad Institute, Inc.
  • Principal Investigators: Nikhil Wagle; Katherine A. Janeway
  • Description: Investigators at the Broad Institute Inc. and the Dana Farber Cancer Institute at this Research Center, will partner directly with patients with two rare cancers – osteosarcoma and leiomyosarcoma – to generate a large, shared database of clinical, genomic, molecular, and patient-reported data. This work can accelerate discoveries that drive novel treatment strategies, new clinical trials, and new standards of care, and also serve as a model for patient-partnered research in other cancer types and patient communities.

Engagement of American Indians of Southwestern Tribal Nations in Cancer Genome Sequencing

  • Institution: University of New Mexico Health Sciences Center; The Translational Genomics Research Institute (TGen)
  • Principal Investigators: Cheryl L. Willman; Jeffrey M. Trent
  • Description: Led by investigators from the University of New Mexico, the Mayo Clinic, the Translational Genomics Research Institute (TGen), and the Black Hills Center for American Indian Health, and with the guidance of a formal Tribal Advisory Board composed of tribal leaders, this project will engage with American Indian cancer patients and their communities in order to increase their understanding and participation in precision medicine, molecular characterization of tumors, and cancer research, with the long-term goal of reducing their cancer burden and tremendous cancer health disparities. Comprehensive clinical genomic sequencing results are being returned in real time to cancer patients and survivors and their treating physicians to be of beneficence and to guide interventions.
  • Video about this project (Cancer Moonshot Seminar Series)External Web Site Policy

Participant Engagement and Cancer Genome Sequencing (PE-CGS): Coordinating Center

  • Institution: Ohio State University
  • Principal Investigators: John Bridges; Qin Ma; Electra D. Paskett
  • Description: The Coordinating Center, led by investigators from The Ohio State University, provides administrative and scientific support to the Network’s researchers and participants. The Coordinating Center facilitates outreach and communications, and helps standardize approaches to data collection, including participant engagement. The Coordinating Center also works to introduce a diverse pool of future scientists from underrepresented groups to cancer genomics and participant engagement research.

Scientific Contacts

Please direct all inquiries about the network to NCI_PE-CGS@mail.nih.gov.

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

Wen-Ying Sylvia Chou, PhD, MPH
Program Director
Health Communication and Informatics Research Branch
Behavioral 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