by Edward Winstead
After being diagnosed with a low-grade glioma at the age of 29, Riz Salmi became a researcher who studies communication between scientists, doctors, and patients. She is a co-investigator on her OPTIMUM study.
Credit: Richard O'Leary/Liz Salmi
Some patients with low-grade glioma, a type of brain tumor, can survive for years or even decades without the disease getting worse. However, eventually these cancers begin to grow, but little is known about why or how this happens.
An NCI-supported study called OPTIMUM (Optimizing Engagement in Molecular Evolutionary Discovery of Low-Grade Gliomas) may provide some answers.
This study is part of the Cancer Moonshot Initiative, which aims to improve care for patients with low-grade gliomas by better understanding their biology. To achieve this goal, this study explores new ways to engage participants in cancer research.
“We are trying to engage and recruit participants to this study through a variety of approaches,” said OPTIMUM co-leader, neurosurgeon at Brigham and Women's Hospital in Boston and professor at Yale University. said Elizabeth Kraus, MD. School of Public Health.
In addition to interacting directly with patients in the clinical setting, the study also engaged people through social media channels and collaborated with patient organizations such as the American Brain Tumor Society and the National Brain Tumor Association, Dr. Kraus added.
Her hope is that as more patients participate in the study, important insights will be gained to improve patient care.
The most common malignant primary brain tumor in adults
Glioma is the most common type of malignant primary brain tumor in adults. When a glioma is diagnosed, it is graded from 1 to 4, with higher numbers indicating a poorer prognosis.
Most adults with low-grade gliomas (grade 2/3) are diagnosed at a relatively young age, in their 20s, 30s, or 40s. Tumors tend to grow slowly at first, and surgery is often used as initial treatment.
However, at some point the disease usually worsens and radiation therapy or chemotherapy is often required after the second surgery. These treatments, like the disease itself, often cause changes in cognitive function, such as difficulty concentrating, learning, and remembering new things, and can reduce quality of life.
“We don't know the best way to manage these tumors,” Dr. Kraus says. Compared to more aggressive brain tumors such as glioblastoma, low-grade gliomas have historically received less attention from researchers, she continued.
Learn more about how low-grade gliomas are treated
OPTIMUM was developed to address gaps in knowledge about the disease, both its biology and the experience of people affected by the disease. In addition to genomic analysis of tumors, this research includes listening to the stories of people affected by the disease to better understand the challenges they face and future research priorities. .
The goal, Dr. Kraus says, is to help people with these brain tumors not just survive, but survive with a high quality of life.
“We ask our participants, most of whom are in their prime working years and busy with work, family, and life in general, what is important to them and what is useful to them,” she said. Ta. Support options include neurocognitive rehabilitation, assistance with issues such as disability and life insurance, and fertility management.
The OPTIMUM team would like to learn more about the best timing for treatment and when it is safe to delay treatment. Results from clinical trials suggest that several new treatments are possible, including drugs to suppress brain tumors associated with brain mutations. IDH1 or IDH2 Genes may postpone the need for additional treatment, Dr. Kraus noted.
“We want to examine these questions in a real-world setting,” she said, adding that the majority of low-grade gliomas carry one or the other mutation. IDH1 or IDH2.
Opportunity to participate in genomic research
Bethany Kwan, Ph.D., from the University of Colorado Graduate School and a co-leader of OPTIMUM, said OPTIMUM researchers are also “researching the best ways to engage people as partners in research, not just as participants but also as co-designers of research.” “I am doing so,” he said. of medicine.
“By involving patients, care partners, and other community representatives in the research process, we hope to make research participation more equitable and research findings more broadly relevant.” Dr. Kwan added.
She and her colleagues are enrolling participants from across the country, aiming to include representative groups from diverse socio-economic, racial and ethnic backgrounds.
According to Riz Salmi, who has lived with grade 2 astrocytoma, a type of low-grade glioma, for nearly 16 years, OPTIMUM will be the first time low-grade glioma patients will participate in genomic research. It's an opportunity.
Since being diagnosed with cancer at age 29, Salmi has become an advocate for cancer patients and a researcher who studies communication between scientists, doctors, and patients.
In the past few years, it has become more common for people with diseases such as cancer to be directly involved in guiding the direction of research into their disease, says Beth Israel Deaconess Medical. says Salmi, who is working on a research project called OpenNotes. In the heart of Boston.
“More researchers are starting to say, 'We should actually talk to people who have lived with a particular condition and involve them in setting research questions and priorities,'” Salmi says. he said.
Ms. Salmi is an OPTIMUM co-investigator and a member of the research advisory board for this study. This group includes people living with low-grade gliomas, care partners, physicians, and researchers who will discuss priorities for future research, among many other topics.
Nesterine Gay, who has lived with low-grade glioma for more than 10 years, is a member of the research advisory committee for the OPTIMUM study.
Credit: Nesterine Gay
Another member of the council is Nesterine Gay, patient resource coordinator at Henry Ford Health of Michigan. Gay, who was diagnosed with the disease 10 years ago at age 37, runs a Facebook group for more than 4,000 people living with low-grade glioma.
“My work on the advisory committee is very important to me because there is still no cure for this disease,” she said.
Collecting data on environmental exposures
Since its launch last year, OPTIMUM has registered over 140 participants. To qualify, he must have had two or more surgeries for the disease. OPTIMUM team members collect tumor samples from the hospital where the surgery was performed. Participants will also be asked to take a blood sample.
This study is based on the International Low-Grade Glioma Registry, which includes approximately 700 patients with low-grade glioma.
In addition to collecting data on potential genetic and environmental risk factors for the disease, the registry also includes information on how treatment impacts patient outcomes and quality of life.
OPTIMUM researchers collected information about non-genetic factors that may play a role in the disease, such as environmental exposures. Dr. Kraus and his colleagues at the Yale School of Public Health recently found evidence of a link between chemicals called haloalkanes, found in flame retardants and fire byproducts, and glioma risk.
Building on this finding and previous reports linking firefighting and gliomas, researchers at Yale University teamed up with colleagues at the University of California, San Francisco to study gliomas in firefighters.
“We are actively recruiting these people to enroll to learn more about such exposures and glioma risk,” Dr. Kraus said.
Making it easier for people to participate in cancer research
A core tenet of OPTIMUM is that participants receive the results of genomic analyzes performed on their tumors. Although the study aims to make it easier for patients to participate in research, it also raises some challenges.
For example, the infrastructure for people to easily access and share their medical records does not exist. Potential participants may have received care from multiple hospitals, and researchers leading OPTIMUM may need these records.
Dr. Kwan explained that the OPTIMUM team is working on some of the technical issues related to retrieving participants' health records. “But right now, it's very difficult for patients to access their health records and share data,” she says.
Dr. Kwan pointed out that many patients with low-grade gliomas are actively participating in research. But researchers need to educate these people about what genomics is and how genomic test results can influence doctors' treatment recommendations, he added.
Equally important is making it easier for people living with low-grade gliomas to participate in research. “We need to give potential participants specific guidance on what exactly they need to do, and it should be very easy for them,” Kwan said. said the doctor.
Salmi agreed. “Patients need some support, a training process, to participate in research,” she says.
“Diagnosis can be difficult,” Salmi continued. “People are not prepared for all the medical and life decisions they have to make immediately after being diagnosed with a brain tumor. This is not something you teach in health class.”
Low-grade glioma patients can get immediate help
For Salmi and others living with cancer, partnering with researchers can be a rewarding experience.
“For those of us who still have access to language, it's important to share information, especially for those affected by brain cancer,” she says. “We want to be helpful.”
The OPTIMUM Research Advisory Council embodies Salmi's belief that medicine is most effective when physicians, researchers, and patients work together.
“All of our council members are there because they want to make a difference,” she said. “And while we may not be experts in science, we are bringing something else to the table: We are experts in patient experience.”
