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Overview
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://pe-cgs.org.
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 Center 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 Sequencing 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) 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) University of Southern California |
Colorectal cancer | Hispanics/Latinos |
| WU-PE-CGS Washington University in St. Louis |
Multiple myeloma, cholangiocarcinoma, colorectal cancer | Adults with cholangiocarcinoma, Black Americans under age 50 with colorectal cancer, Black Americans with multiple myeloma |
| PE-CGS Coordinating Center 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