Glioblastoma Genomic Testing: What Patients Should Ask

For patients with glioblastoma, the standard of care — surgery followed by radiation and chemotherapy — has changed little in two decades, and average survival after diagnosis remains about 12 to 15 months. The Glioblastoma Foundation, which marks its 10th anniversary in 2026, has spent that decade funding research into targeted treatments based on the molecular features of each patient's tumor.

Now the foundation is doing the testing itself. Its genomic testing and research laboratory, GlioLab, accepted its first patient sample in late October, after two years of work to meet federal regulatory requirements for patient testing.

CURE spoke with Kwatra about where patients fall through the cracks, what whole genome DNA methylation profiling can reveal, and what she hopes changes next.

This interview has been edited for length and clarity.

CURE: Can you introduce yourself and tell us about the Glioblastoma Foundation's mission?

Kwatra: I'm CEO of the Glioblastoma Foundation. We were established in 2016, so 2026 marks our 10-year anniversary, which is really exciting for us. Our mission is to fund research for targeted treatments for glioblastoma.

That's important because, over the last 20 or 30 years, much of the funding for this cancer has gone to immunotherapy, and immunotherapy only helps about 2% of patients with glioblastoma. Ten years ago, we realized we needed to take a different approach to treating this cancer and finding a cure. So we focus on targeted treatments — a personalized, tumor-centric approach.

Around the time we were founded, research showed that every glioblastoma tumor is different from patient to patient. A lot of notable figures have had this disease — Ted Kennedy, Beau Biden, John McCain. If you looked at each person's tumor under a microscope, you'd see key differences. You can't take a standard approach to treating this cancer, and that's why the standard of care falls short.

Right now, the standard of care is surgery to remove as much of the tumor as possible, followed by radiation and chemotherapy. It hasn't been very successful, unfortunately. Average survival after diagnosis is about 12 to 15 months. So we're focused on funding research to extend survival, and on drugs and other treatments based on the molecular features of a patient's tumor.

About two years ago, the logical next step was to say: We're funding all this targeted research, but we need to really look at every patient's tumor. That led us to form our genomic testing and research laboratory. Over the last two years, we've gone through federal regulations to get the lab approved for patient testing, and we accepted our first patient sample about a week ago.

Our organization is aiming to fix the gap between patients and physicians — patients being able to access this testing and getting those results back to their doctors.

CURE: Where do you see the greatest gaps in care when it comes to accessing genomic testing, receiving results and communicating between hospitals? How do those gaps affect patients?

Kwatra: Access is a big gap right now, and so is patient education. Patients don't know this testing is available. Now that it's finally available to patients, education is going to be a big piece.

Physician education, too. To be honest, genomic testing is something a lot of physicians don't understand right now, and getting patients access can be very difficult without that. Over the next six months or so, there has to be a big push toward education.

Once patients get tested, there's the question of getting results back. Our goal is to return results within seven to 14 business days. That's quicker than patients can sometimes get an official diagnosis. The first patient we accepted is still waiting for hers — her team doesn't know whether she has a grade 3 or grade 4 brain tumor. Whole genome DNA methylation profiling will help get her an accurate diagnosis.

Many of these patients also have very large treatment teams. Sometimes the neurosurgeon places the order, but the results need to reach the neuro-oncologist for treatment. So one of the first things we decided to do was have every patient sign a consent to release their results to a third party. That way, we can release results to any member of a patient's treatment team without hurdles.

CURE: What does genomic testing reveal that traditional diagnostic methods don't? And how do those findings influence treatment decisions, prognosis or clinical trial eligibility?

Kwatra: Whole genome DNA methylation profiling is considered advanced genomic testing. After an initial diagnosis by a pathologist, samples are generally sent for some biomarker testing, such as MGMT methylation and IDH status. Glioblastoma is typically defined as IDH wild-type, so that's part of the primary diagnosis.

Histopathology is a cornerstone of brain tumor diagnosis and is very important. But for glioblastoma specifically, histopathology is correct only about 80% of the time, so patients can be misdiagnosed about 20% of the time — a pretty high number. With whole genome DNA methylation profiling, patients can receive an accurate diagnosis with 95% to 99% confidence. That's going to be a game changer, because how can you really treat something when you don't know what it is? We think every brain tumor patient should have access to this testing in the years to come, and that will be our mission.

MGMT methylation testing looks at just one gene. This testing looks across the whole genome. There are about 28 million methylation sites, and this profiling looks at about a million of them, so we get a pretty good picture of what's happening at a very deep level in each tumor.

That methylation profile is like a fingerprint for a tumor. It's different for each patient, and it tells us how to treat the tumor. It can tell us about prognosis and even what survival looks like. Right now, we tell patients not to look at averages because every patient is so different — and this speaks to why. It's one of the reasons treatments really need to be personalized.

CURE: What are the challenges in translating molecular discoveries into better treatments, and what's being done?

Kwatra: You're absolutely right — there haven't been many advances in the last 20 to 30 years. In 2005, temozolomide was added to the standard of care, and that improved survival by about two or three months. Since then, there have been tumor treating fields, where the benefit is still debated, and Avastin [bevacizumab], which didn't add to overall survival but helps with progression-free survival after the tumor comes back.

One reason is that these patients don't live very long. It's a very fast-moving disease, so many drug companies don't want to invest in it, which leaves it to nonprofits to take on. It's also considered a rare disease — only about 15,000 people are diagnosed each year — so getting federal funding is very hard, and in today's environment it's almost nonexistent.

But there are also promising new treatments being developed as pan-cancer drugs, which can be used for patients with any cancer who have a specific molecular feature or mutation. That's where the opportunity with genomic testing lies: once we have a patient's genomic results in front of us, we can start matching them to pan-cancer treatments that were developed for other cancers but may also work for glioblastoma. Right now, every patient getting genomic testing will help broaden the treatment options available.

Long term, five years down the road, we hope to build a repository of genomic data from 5,000 or 10,000 patients that we can use to develop targeted treatments and learn how genomics play into survival and prognosis. It's a very exciting time — the calm before the storm for us. We're adding two more tests in mid-2027: comprehensive genomic profiling and fusion detection testing. Fusions play a very big role in cancer development, including glioblastoma.

CURE: For someone newly diagnosed with a brain tumor, what should they ask their care team about genomic testing? And what can they do if results are delayed or inaccessible?

Kwatra: One thing patients sometimes don't understand, and it's a good starting point for everybody: During surgery, the neurosurgeon removes as much of the tumor as possible and sends it to pathology for testing and preservation. That tumor belongs to the patient. If the patient requests that genomic testing be done and that the tissue be sent to GlioLab, the doctor must comply. That's an important piece a lot of patients don't realize.

So patients can ask for this testing, and we can work with them to get it done. The doctor must put in the order, but the patient needs to be part of that conversation — a lot of times, the patient needs to ask for the testing.

CURE: Looking ahead, what changes do you hope to see in patients' access to this information and how it's used to guide care?

Kwatra: We hope to make more information available to patients than has historically been available. We can't give results directly to the patient, but we can make sure their primary treating physician receives them as quickly as possible. We don't want results getting lost.

We want to keep the lines of communication open with the patient throughout the process. We can tell patients when their tumor is being tested and when results might be sent to their doctor. Staying in constant communication with both the patient and the doctor is very important.

With the two additional tests coming in 2027, we hope patients will have one place to go for this testing instead of 10 different places. That's one of our reasons for offering all three tests for glioblastoma patients — so they aren't searching for where to get tested or where their results are, and they know more about how their tumor is being tested.

CURE: Is there anything else you'd like to share?

Kwatra: On our website, gliolab.org, we have all the forms patients need to complete to get genomic testing. Some of them, like our consent form and the release of test results to third parties, must be completed by the patient. Our goal is to make it easier for physicians to get results back in a timely manner, so there aren't gaps in communication between patients and physicians.

For more news on cancer updates, research and education, don't forget to subscribe to CURE®'s newsletters here.