Background: Participant Engagement and Cancer Genome Sequencing (PE-CGS) is a Network funded by the National Cancer Institute through the Cancer Moonshot. PE-CGS engages cancer patients and survivors in research to address knowledge gaps in the genomic characterization of rare or highly lethal cancers, cancers with high disparities, and cancers in understudied populations.
Methods: PE-CGS established common values using a structured process. Interviews were conducted to characterize PE-CGS engagement activities, where engagement involves mutually beneficial interactions with cancer patients, survivors, and their communities to recruit, consent, collect and analyze tumor samples, and return genomic results to participants in engaging, culturally sensitive ways. Count data was gathered on participant enrollment, samples collected and sequenced, cancer types, and participants’ self-identified race/ethnicity.
Results: PE-CGS’ common values are: being participant centered; engagement; collaboration; innovation, and equity. PE-CGS studies are guided by advisory boards and engage participants using four types of activities: digital communications, non-digital communications, in-person events, and collaborative partnerships. Through 10/06/2023, PE-CGS has enrolled 1,094 participants and collected 412 and sequenced 147 tumor samples. 777 participants were individuals with rare cancers, including osteosarcoma, leiomyosarcoma, cholangiocarcinoma, and low-grade glioma. 317 participants were individuals with high disparity cancers, including individuals who self-identify as: American Indian and have various cancers; Black/African American and have multiple myeloma or early-age onset colorectal cancer; or Hispanic/Latino and have colorectal cancer.
Discussion: PE-CGS is filling data gaps. We demonstrate the necessity and benefits of engaging participants and their communities to improve trust and participation of historically underrepresented populations in cancer research.
Authors: Anne Schuster, The Ohio State University; John Carpten, City of Hope; Elizabeth Claus, Yale School of Public Health; Brigham and Women’s Hospital; Graham Colditz, Washington University School of Medicine; Li Ding, Washington University School of Medicine; Bettina Drake, Washington University School of Medicine; Ryan Fields, Washington University School of Medicine; Suzanne George, Dana-Farber Cancer Institute; Katherine Janeway, Dana Farber / Boston Children’s Cancer and Blood Disorders Center, and Broad Institute of MIT and Harvard, Harvard Medical Schoo; Bethany Kwan, University of Colorado Anschutz Medical Campus; Heinz-Josef Lenz, Keck School of Medicine of University of Southern California; Jennifer Mack, Dana-Farber Cancer Institute; Jeffrey Trent, Translational Genomics Research Institute part of City of Hope; Eliezer Van Allen, Dana-Farber Cancer Institute; Roel Verhaak, Yale School of Medicine; Cheryl Willman, Mayo Clinic Comprehensive Cancer Center; University of New Mexico School of Medicine and Comprehensive Cancer Center; John Bridges, The Ohio State University College of Medicine
