One of the most infrequently studied brain tumors is low-grade glioma, a slow growing but malignant tumor that is diagnosed primarily in young to middle-aged adults. A critical question in the field of neuro-oncology is how to best manage and treat these tumors.
A team of scientists led by Dr. Elizabeth B. Claus, PhD ’88, MD ‘94 professor of biostatistics at the Yale School of Public Health (YSPH) and an attending neurosurgeon in the Department of Neurosurgery at Brigham and Women’s Hospital, recently received a $13 million grant to help answer these questions by investigating the molecular evolution of lower-grade gliomas.
The study, “OPTIMIzing engageMent in discovery of molecular evolution of low-grade glioma,” or OPTIMUM, is one of five projects within the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. This network is a part of the Cancer Moonshot℠ Initiative. A collaborative effort between researchers and participants, the network is designed to lead to new discoveries in cancer genomics. OPTIMUM includes researchers from Yale University, The Jackson Laboratory, the University of Colorado, Brigham and Women's Hospital, and Beth Israel Deaconess Medical Center.
“Lower-grade gliomas affect patients who are diagnosed in the prime of life, but for whom the optimal treatment remains unknown, hence the importance of further research in this area,” she added.
Our study will be the first large-scale and patient-engaged effort to provide a comprehensive genomic characterization of the evolution from primary low-grade glioma to recurrence.
Elizabeth B. Claus
Genotyping Tumors
One strategy to address gaps in low-grade glioma research is through direct participant engagement. “The goal of OPTIMUM is to better understand how low-grade glioma tumors evolve over time and respond to treatment,” Claus said. “The team will extensively genotype these tumors to establish a comprehensive genomic characterization of the tumors across time.”
The project will enroll participants from across the United States using social media as well as direct enrollment at medical centers including Brigham and Women’s Hospital. The group, which includes co-investigators Roel Verhaak, PhD, from the Jackson Laboratory in Farmington, Conn., and Bethany Kwan, PhD, from the University of Colorado, will work extensively with the two largest brain tumor patient organizations in the U.S., the American Brain Tumor Association (ABTA) and the National Brain Tumor Society (NBTS).
“By engaging a variety of stakeholders and including patients as equal partners in the research process, we hope to undertake a project that will translate to clinical benefit for patients with low-grade glioma,” Claus said.
Reaching the Hispanic Community
In addition to the main study, the team also received a $1.5 million supplement (Optimizing Participant Engagement to Promote Equity in Low Grade Glioma Genomic Research (OPEL)) to better include persons who are of Spanish ancestry or Spanish-speaking in the International Low-Grade Glioma Registry which Claus launched in 2016. The purpose of the LGG Registry is to discover why some people develop low-grade glioma while other people do not.
“The goal of the registry is also to learn more about the effect of this diagnosis and treatment on daily life including the ability to work, drive, think, or take care of oneself or family,” Claus said. “At present, the majority of people in the registry are of non-Hispanic, Western European ethnicity.” People from the Hispanic/Latino community have been infrequently represented in neuro-oncology research efforts, Claus added. “This supplement will allow us to broaden the reach of glioma research to the worldwide Hispanic/Latino community.”
Claus is a member of the board of advisors for the Acoustic Neuroma Association as well as the Central Brain Tumor Registry of the United States. Her work is focused on cancer and genetic epidemiology with an emphasis on the development of risk models for breast and brain tumors. She is the overall PI of the Meningioma Consortium, the Meningioma Genome-Wide Association Study, and the Yale Acoustic Neuroma Study as well as a co-investigator of the GLIOGENE (Genes for Glioma) and International Glioma Case/Control (GICC) projects.
For further information or to enroll please contact glioma@yale.edu or visit https://app.hugo.health/enroll/LGG or https://lggregistry.wixsite.com/study