{"id":46099,"date":"2023-08-24T12:00:00","date_gmt":"2023-08-24T12:00:00","guid":{"rendered":"https:\/\/www.cancer.gov\/news-events\/cancer-currents-blog\/2023\/low-grade-glioma-optimum"},"modified":"2024-11-03T15:12:24","modified_gmt":"2024-11-03T15:12:24","slug":"engaging-people-with-low-grade-glioma-in-cancer-research","status":"publish","type":"post","link":"https:\/\/ogkologos.com\/en\/engaging-people-with-low-grade-glioma-in-cancer-research\/","title":{"rendered":"Engaging People with Low-Grade Glioma in Cancer Research"},"content":{"rendered":"

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\"Liz <\/div>
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Since her low-grade glioma diagnosis at age 29, Liz Salmi has become a researcher who studies communication among scientists, physicians, and patients. She is a co-investigator on the OPTIMUM study.<\/p>\n

Credit: Richard O’Leary\/Liz Salmi<\/p>\n<\/p><\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

Some people with low-grade glioma, a type of brain tumor, can live for years, even decades, without the disease worsening. But eventually these cancers start to grow, and little is known about why\u2014or how\u2014this happens.
 
An NCI-supported study called OPTIMUM<\/a> (Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma) could provide some answers.<\/p>\n

The study, which is part of the Cancer Moonshot initiative<\/a>, aims to improve the care of people with low-grade glioma by understanding more about the biology of the disease. To achieve this goal, the study is exploring new ways to involve participants in cancer research.<\/p>\n

\u201cWe are attempting to engage and recruit participants to the study through a wide variety of approaches,\u201d said OPTIMUM co-leader Elizabeth Claus, M.D., Ph.D., a neurosurgeon at Brigham and Women\u2019s Hospital in Boston and a professor in the Yale School of Public Health. <\/p>\n

In addition to speaking directly with patients in clinical settings, the study is engaging people through social medial channels and enlisting the help of patient organizations such as the American Brain Tumor Association and the National Brain Tumor Society, Dr. Claus added.<\/p>\n

Her hope is that getting more patients to participate in research will help provide important insights into improving patient care.  <\/p>\n

The most common malignant primary brain tumor in adults <\/h2>\n

Gliomas are the most common type of malignant primary brain tumor in adults. When gliomas are diagnosed, they are graded from 1 to 4, with the higher numbers indicating a worse prognosis.<\/p>\n

 
Many adults with lower-grade<\/a> glioma (grades 2\/3) are diagnosed at relatively young ages, in their 20s, 30s, and 40s. The tumors tend to grow slowly at first, and surgery is often the initial treatment. <\/p>\n

But at some point, the disease generally worsens and requires radiation and\/or chemotherapy, often after a second surgery. These treatments, as well as the disease itself, often cause cognitive changes that can reduce a person\u2019s quality of life<\/a>, including difficulty concentrating, learning, and remembering new things. <\/p>\n

\u201cThe optimal ways to manage these tumors are not known,\u201d said Dr. Claus. Compared with more aggressive brain tumors such as glioblastomas, she continued, lower-grade gliomas have historically received much less attention from researchers.<\/p>\n

Learning more about how to treat low-grade glioma<\/h2>\n

OPTIMUM was developed to address the lack of knowledge about the disease\u2014both its biology and the experiences of people who have it. In addition to genomic analyses of tumors, the study involves listening to people affected by the disease to better understand the challenges they face and their priorities for future studies.<\/p>\n

The goal is to help people with these brain tumors not just to survive, Dr. Claus said, but survive with a high quality of life.<\/p>\n

\u201cWe are asking participants\u2014most of whom are in the prime of their lives and are busy with work, family, and life in general\u2014about what is important to them and what would be helpful to them,\u201d she said. Some options for support include neuro-cognitive rehabilitation, help with issues such as disability and life insurance, and fertility management.<\/p>\n

The OPTIMUM team is also interested in learning more about the best timing for treatment and when it might be possible to safely delay treatment. Results from clinical trials<\/a> have suggested that some new treatments such as drugs that inhibit brain tumors with mutations<\/a> in the IDH1<\/em> or IDH2<\/em> genes may postpone the need for additional treatments, Dr. Claus noted.  <\/p>\n

\u201cWe hope to look at these questions in a real-world setting,\u201d she said, adding that the majority of lower-grade gliomas have mutations in either IDH1<\/em> or IDH2<\/em>.<\/p>\n