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

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PROJECT SUMMARY Vision. Participant engagement and sequencing research from the Washington University Participant Engagement and Cancer Genomic Sequencing Center (WU-PE-CGS) will fill critical gaps in knowledge, methodology, and characterization of understudied cancer populations, leading to optimal approaches to participant engagement, outreach, and communication in genomic characterization studies. Goal. The overall goal of the WU-PE-CGS is to build a rigorous, scientific evidence base for approaches direct engagement of cancer patients and post-treatment cancer survivors as participants in cancer research. Our focus is on rare and understudied cancer populations with significant disparities including cholangiocarcinoma, multiple myeloma, and colorectal cancer under age 50. Participant engagement strategies are most effective when they are adapted and implemented in real-world settings in partnership with community and patient advocacy stakeholders. Setting. Our Center will be housed in an exceptional environment that fosters transdisciplinary collaboration, catalyzes new ideas in patient engagement, and ensures support for patient engagement and genome sequencing that finds solutions for complex recruitment and engagement challenges in real-world settings with underrepresented patient populations. Significant matching contributions from Washington University will allow us to quickly and strategically invest in ideas. Aims. The specific aims of the Center are to: (1) Advance the field of participant engagement to study cancer disparities and rare cancers by conducting innovative and impactful direct stakeholder engagement with continuous evaluation and research; (2) Expand an exceptional, diverse team of investigators, patients, and advocacy stakeholders; (3) Address cancer disparities by understanding barriers to and improving the ability for disadvantaged and understudied populations to encounter, use, and benefit from genomic sequencing and analysis; (4) Organize and integrate Center units to facilitate transdisciplinary, team science within our Center and across the PE-CGS Network. Innovations and impact. The WU-PE-CGS builds on a long and outstanding record of leadership in both cancer disparities and genomic research across the cancer continuum. We will be particularly innovative and allow for a significant return on the scientific investment in several ways. First, our Center has distinctive features that include a combined focus on cancer disparities, the application of strategies to increase participant engagement in research, success in biospecimen acquisition, and exceptional genomic sequencing expertise. Second, we have assembled a diverse, world class team with strong linkages to multiple rare and understudied cancers. Third, we engage investigators from different disciplines and invest in the development of early career scholars. Fourth, we will strategically and creatively disseminate products in ways that will benefit researchers, practitioners, and community members. Fifth, we will partner with exceptional patient-centered and wide-reaching advocacy groups to engage patients, optimize recruitment, and seamlessly return results. Input from these groups, patients, and their families is a key strength that will leverage our track record of stakeholder-engaged research. And finally, we have developed a focused strategy for collective integration of our units. These synergies will allow our Center to become a national resource for optimal approaches to participant engagement, outreach, and communication in genomic characterization studies and other studies as technologies advance that will accelerate progress for both the scientific community, patients and their communities. In summary, we are uniquely situated to advance a network of participant engagement and sequencing researchers, integrate research with patients and their stakeholders, build intellectual capital, and significantly enhance the capacity for participant engagement and genomic characterization studies. This Center will ultimately benefit health systems, providers, and people with rare cancers and lead to a reduction in cancer disparities.