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 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 https://app.hugo.health/enroll/LGG. Those interested in learning more about our research can do so at gliomaregistry.org.

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

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

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.

We were happy to include virtual participants in all of the activities and presentations throughout the meeting.

Schuster ALR, Crossnohere NL, Paskett J, Thomas N, Hampel H, Ma Q, Tiner JC, Paskett ED and Bridges JFP. Promoting patient engagement in cancer genomics research programs: An environmental scan. Front. Genet. 2023;14:1053613. doi: 10.3389/fgene.2023.1053613

Schuster ALR, Crossnohere NL, Bachini M, Blair CK, Carpten JD, Claus EB, Colditz GA, Ding L, Drake BF, Fields RC, Janeway KA, Kwan BM, Lenz HJ, Ma Q, Mishra SI, Paskett ED, Rebbeck TR, Ricker C, Stern MC, Sussman AL, Tiner JC, Trent JM, Verhaak RGW, Wagle N, Willman C, Bridges JFP, for the PE-CGS Network. Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Cancer Epidemiol Biomarkers Prev. 2023;32:4(487-495). doi: 10.1158/1055-9965.EPI-22-0356

Rebbeck TR, Bridges JFP, Mack JW, Gray SW, Trent JM, George S, Crossnohere NL, Paskett ED, Painter CA, Wagle N, Kano M, Nez Henderson P, Henderson JA, Mishra SI, Willman CL, Sussman AL. A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research. JAMA Health Forum. 2022;3(4):e220603. doi:10.1001/jamahealthforum.2022.0603

Schuster, ALR, Hampel H, Paskett ED, Bridges JFP. Rethinking patient engagement in cancer research. Patient. 2022. https://doi.org/10.1007/s40271-022-00604-9

PE-CGS_PublicationPolicy_v7.1

Count Me In: Partnering with Patients to Define the Landscape of Rare, Aggressive Sarcomas - Katherine Janeway, MD (Count Me In)

Engagement of American Indians of Southwest Tribal Nations in Cancer Genome Sequencing - Cheryl Willman, MD & Jeffery M. Trent, PhD (UNM/TGen)

Addressing Cancer Disparities through Patient Engagement and Genome Science - Mariana C. Stern, PhD & John D. Carpten, PhD (COPECC)

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