News

2024

PE-CGS AACR Annual Meeting Sessions

Community Health Educator Supplement

Members of the Network will present at the upcoming AACR Annual Meeting, April 9, in San Diego, CA. The session will provide updates and insights gained from those participating in the Community Health Educator Supplement Program. Scheduled tasks are as follows:

Strengthening Hispanic/Latino Osteosarcoma Patient Engagement in Genomic Sequencing Studies - Timothy Rebbeck (Count Me In)
Increasing cancer genetic education and research engagement among Latino communities: the Community Genetic Navigation Engagement Specialists (CoGENES) training program - Mariana Stern (COPECC)
Conducting Community Cafes to Enhance Cancer Genetic Research and Referral Approaches for Black Americans - Erin Linnenbringer (Wash-U)
OPtimizing Engagement of Latino Communities to Promote Equity in Low Grade Glioma Genetic Research (OPEL) - Elizabeth Claus (OPTIMUM)

Sessions

Testing of an educational toolkit for the Community Genetic Navigation Engagement Specialists, CoGENES, Training Program - Lourdes A. Baezconde-Garbanati (COPECC)

Posters

Testing of an educational toolkit for the Community Genetic Navigation Engagement Specialists, CoGENES, Training Program - Janet Rodriguez (COPECC)
Increasing self-efficacy, self-confidence, and genetic knowledge via the Community Genetic Navigation Engagement Specialist Train-the-Trainer program - Janet Rodriquez (COPECC)
Determinants of generalized self-efficacy and genetic knowledge among Hispanic/Latino colorectal cancer patients participating in ENLACE: A Cancer Moonshot Study
Multi-omics characterization of molecular features and global-local genomic ancestry analysis of colorectal cancer in Hispanic-Latinos - Enrique I. Valezquez Villarreal (COPECC)

Learn more about the AACR Annual Meeting 2024

Cancer HealthCast: This Unique Network Closes Research Gaps in Cancer Genomics

The effort engages cancer patients and survivors to advance research that addresses diversity and equity issues in cancer care.

The Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network, part of the Cancer Moonshot Initiative, is a collaboration between the National Cancer Institute and research institutions to engage cancer patients directly and ultimately better understand cancer genomics.

One of six funded projects is with Washington University, which is focusing on rare and understudied cancer populations with health disparities. Dr. Bettina Drake, professor at the university’s School of Medicine, discusses how her team is studying molecular changes in tumors for cancers like cholangiocarcinoma, multiple myeloma in African Americans, and colorectal cancer in African Americans under the age of 50. NCI Program Director Dr. Leah Mechanic also discusses how the PE-CGS Network overall is advancing health equity and precision medicine efforts around cancer care and treatment.

This is an in-depth peek into one of many programs within a broader collaboration effort to better understand cancer and accelerate the White House’s Cancer Moonshot’s mission to end cancer as we know it. To listen to the podcast, click here

2023

PE-CGS Annual Meeting: Inspire, Collaborate, Discover, & Engage

The Network was pleased to host the 2023 Annual Meeting on October 24th-26th at the University of New Mexico Comprehensive Cancer Center.

A key focus of the meeting was on the integral role of participant engagement. Discussions delved into addressing potential challenges in engagement and solutions, while emphasizing on a culturally sensitive approach to engage participants and prioritizing the best practices for communication research results. Particular attention was devoted to understanding the reasons behind the reluctance of some individuals to participate in genomic research studies. The meeting proposed to address this issue systematically, exploring the underlying factors and advocating for comprehensive strategies to address these concerns.

The event featured an array of research posters, offering comprehensive overviews of research centers and e-posters showcasing communication and educational materials. Emerging genomic tools took center stage, with discussions centered around their potential to revolutionize cancer care. Special consideration was given to the need for culturally appropriate ethical frameworks in genomic research, especially when working with understudied and indigenous populations to foster meaningful engagement in shaping the design and conduct of studies.

A dedicated segment of the meeting explored the current state of artificial intelligence (AI) within health research, emphasizing crucial ethical considerations such as the need for the integration of diverse perspectives, and regulatory input for ethical deployment of AI. The event concluded with a focus on leveraging the diversity, size, and scope of the PE-CGS Network to address crucial research questions in the science of engagement, thereby propelling the field forward.

Research Centers had the opportunity to share and discuss their experiences over the past year, including challenges and lessons learned. We were happy to include virtual participants in all of the activities and presentations throughout the meeting.

Engaging People with Low-Grade Glioma in Cancer Research

We are pleased to share that OPTIMUM, a PE-CGS Research Center, was featured on the NCI Cancer Currents Blog. The post highlights OPTIMUM’s mission of improving the care of people with low-grade glioma, their opportunities for people to participate in genomic research, and their current and future projects. To read the full blog post, click here.

OPTIMUM's Annie Heffernan receives Brain Tumor Epidemiology Consortium (BTEC) Junior Investigator Award

OPTIMUM's Annie Heffernan received the Brain Tumor Epidemiology Consortium (BTEC) Junior Investigator Award for OPTIMUM's research on quality of life for their Low Grade Glioma (LGG) Registry. We asked Heffernan a few questions about her background, challenges, and future directions:

Can you briefly tell us about your background and what led you to pursue research on the long-term quality of life for adults diagnosed with LGG?

"I first became interested in this topic when I was in high school, after my godmother was diagnosed with a brain tumor. Although the tumor was benign, I saw how she was affected immediately following surgery and the time and effort it took for her to feel like herself again and return to her normal life. Once I began working on the International Low Grade Glioma Registry and OPTIMUM Study, I realized that many of the LGG patients I talked to also experience symptoms, impairments, and decreased quality of life (QOL), even years after diagnosis and treatment. While we search for more effective therapies to improve overall and progression-free survival, it’s imperative that we also focus on helping individuals with LGG maintain levels of functioning and QOL similar to before their diagnosis."

What are some of the challenges faced by persons with LGG and how can these symptoms be better acknowledged and managed?

"LGGs are marked by slow growth, with longer survival compared to other malignant brain tumors, and typically present in young (mean age 41 years), otherwise healthy adults. These tumors are associated with cognitive and physical symptoms related to both natural disease progression as well as treatment. Because persons with LGG are often in the midst of their careers and family responsibilities, common symptoms such as fatigue and problems with sensation, memory, thinking, or speaking can severely limit the ability to participate in their usual activities and thus diminish QOL. Researchers are starting to consider interventions such as physical exercise and cognitive training to help individuals manage symptoms, however additional work needs to be done to make these therapies more widely accessible."

What are some of the future directions for your research and how might it impact the lives of persons with LGG?

"We hope that by better defining the symptoms and specific aspects of quality of life that are affected in persons with LGG, we can help to inform the development of supportive care and rehabilitative therapies for this population. I am also interested in looking at how quality of life outcomes for LGG patients might be correlated with factors such as diet, exercise, religiousness/spirituality, and social support."

Is there anything else about you or your research that you would like to share?

"We encourage anyone who has been diagnosed with a WHO Grade 2/3 glioma to participate in our research! The International Low Grade Glioma Registry seeks to better understand the risk factors and outcomes, including quality of life, associated with LGG. Individuals who have had two or more surgeries are eligible for OPTIMUM (OPTimIzing engageMent in discovery of molecular evolution of low grade glioma), a study within the Registry that is focused on how the genetic characteristics of LGG evolve over time and in response to treatment. Enrollment for both studies is simple and can be completed online at app.hugo.health/enroll/LGG. Those interested in learning more about our research can do so at gliomaregistry.org."

Community Liaison-based Patient Engagement for Cancer Genetic Education and Research Participation Administrative Supplement Awarded

Congratulations to the PE-CGS Research Centers Count Me In, OPTIMUM, COPECC, and WU-PE-CGS on being awarded the Community Liaison-based Patient Engagement for Cancer Genetic Education and Research Participation Administrative Supplement.

The purpose of this trans-NCI Funding Opportunity Announcement (FOA) is to:

Promote new cancer disparities research among investigators who do not normally conduct it
Encourage the partnership of experienced cancer research investigators with cancer disparities-focused researchers
Accelerate and strengthen multi-disciplinary cancer disparities research in wide ranging areas

Cancer disparities research includes, but is not limited to basic, translational, behavioral, observational, interventional, environmental and population research studies that address the adverse differences in cancer incidence, prevalence, mortality, survivorship, burden and/or response to treatment in racial/ethnic minorities and/or underserved population groups.

Each Research Centers' project focus is listed below:

Count Me In - Strengthening Hispanic/Latino Osteosarcoma Patient Engagement in Genomic Sequencing Studies
OPTIMUM - Optimizing Engagement of Latino Communities to Promote Equity in Low Grade Glioma Genomic Research (OPEL)
COPECC - Increasing Hispanic Cancer Genetic Education & Research Engagement
WU-PE-CGS - Community-Centered Enhancement of Cancer Genetic Research and Referral Approaches

To learn more about these administrative supplements to support cancer disparity collaborative research, click here

'Deciding on My Dimples' - Congratulations on Publication to Liz Salmi

A big congratulations to Liz Salmi on her recent publication in The New England Journal of Medicine. The perspective piece discusses her experience as a patient with grade 2 astrocytoma, including a perspective from the operating room and unlikely familial links.

Liz Salmi is a patient advocate and co-investigator of the OPTIMUM Research Center. Read the article here

2022

PE-CGS Annual Meeting: Partnering Beyond the Science

The Network was pleased to host the 2022 Annual Participant and Investigator Meeting on November 15th and 16th at The Ohio State University. The meeting hosted discussions on the future of the Cancer Moonshot; participant perspectives; insights on the goals and accomplishments of each research center; fostering collaboration in research; and developing shared values for the Network. We were grateful for the presentations by Dr. Dinah Singer from NCI and Dr. Danielle Carnival from the White House Office of Science and Technology Policy.