Among patients with colon cancer, researcher Tom Marsilje has made a name for himself by helping others learn about new clinical trials. He has scoured the database ClinicalTrials.gov, circulated a weekly spreadsheet, and served as a clearinghouse for patients desperate for a chance to beat back their disease.
But, for Marsilje, it has been a labor-intensive process, and it has been hard to escape a troubling reality. He is waging his own fight against stage 4 colon cancer, and if he ultimately succumbs to the disease, his community of fellow patients could lose the kind of information they need most.
On Wednesday, in partnership with a New York-based health technology startup and the advocacy group Fight Colorectal Cancer, Marsilje launched a free online site that largely automates the clinical trials search for patients with his disease, known as microsatellite stable (or MSS) colon cancer.
The idea is to radically simplify the process of digging through ClinicalTrials.gov, the government’s compendium of tens of thousands of clinical trials, which is designed more for researchers and physicians than patients. Marsilje said he hopes the service can one day be expanded to simplify the way people search for clinical trials for other diseases. As he put it, he want to focus on “changing the face of how many types of patients search for and find clinical trials.”
Marsilje, 45, said profit-driven technology companies have tried before to build apps to filter ClinicalTrials.gov, but they generally rely on automated keyword searches, like “colorectal cancer.” Such an approach can miss important clinical trials that are designed for “solid tumors,” for instance, without mentioning colorectal cancer by name.
His results are more curated. With the exception of immunotherapies, which harness the body’s own immune system to fight cancer and which offer the possibility of long-term benefit, Marsilje excludes Phase 1 trials for colorectal cancer because he views the potential risks and benefits as too speculative.
Only a few new trials may appear weekly for his type of cancer, he said, and he can manually update his list within an hour. But that helps no one if he dies, nor does it help other patient groups.
Marsilje said he set up a rudimentary search product in January, in which he listed clinical trials for patients with MSS, the most common type of colon cancer. But he said that after confronting the limitations of what he had created, he searched for nonprofit partners who might be able to build a better version cheaply enough and keep it free.
His contacts suggested a conversation with tech startup Flatiron Health, which agreed to take on his project on a pro bono basis. But, even then, when Flatiron first proposed observing Marsilje as he curated his weekly update, he initially resisted, because he felt they couldn’t possibly intuit the logic of his approach.
Marsilje said his fears were unfounded.
“They were incredibly savvy at setting up algorithms that mimic my brain,” he said.
At the core of Marsilje’s philosophy — and of the new site search — is that patients with MSS should be seeking treatments with either better odds or the possibility of long-term benefits.
To him, that means focusing on immunotherapies, even though a small percentage of patients currently respond to such treatments or later stage trials. So-called “targeted therapies,” which disable the genetic mutations that are driving the tumor, are also worth considering once they start showing clinical efficacy, he said, though for many the effects last less than a year.
Marsilje said that in the search results of the new site, called the Late-Stage MSS-CRC Trial Finder, he also includes links to scientific papers and other sources for the treatments being tested, making it useful for patients as well as community oncologists, who often lack the time to keep abreast of the clinical trial options across many cancer types.
“The patient can then bring in, on a silver platter, a small list of trials with printouts of scientific and medical information on the drug and the drug target, and hand that to their oncologist and receive advice on prioritization,” he said.
The site still requires a specialist to review the contents regularly to check for errors, Marsilje said, and he assumes that there will be missed trials at times. “But mine has a better success rate than others,” he said.
Meanwhile, patients with other cancer types have already spoken with Marsilje about tweaking the technology for their purposes — which, he said, would be relatively easy. And at least one other advocacy group for head and neck cancer, which Marsilje declined to identify publicly, is interested in it, too.
One group that may not be as supportive of his initiative: cancer researchers carrying out Phase 1 trials, since Marsilje’s application does not recommend such trials except in the case of immunotherapies.
As a researcher, he said, he would understand that sentiment. “I’m a scientist, but I have to put heavier weight on life or death versus scientific idealism,” he said. “My agenda is my friends are dying.”
Marsilje’s own health has been precarious. As he’s described on his blog, his cancer this year spread aggressively in his liver, and he is alternating chemotherapy and radiation treatments to control the growth, so he can attempt treatments with possible long-term effectiveness.
Because his cancer has turned so aggressive, however, those drugs will have to come from so-called “compassionate use” programs offered by pharmaceutical makers, and not clinical trial researchers.
As he wrote earlier this month: “Ironically, the ultimate CRC clinical trial advocate is unlikely to ever do a clinical trial.”
There needs to be an organization that gives free colonoscopy screenings to uninsured people like me. I’m 63 and need help. I had a polyp removed during my first screening 9 years ago but I’ve been uninsured since then so I’ve never been able to have a second colonoscopy screening.
Mr. Marsilje is doing a great service for cancer patients. I have participated in two clinical trials that failed me for NHL and am involved in a compassionate program presently. Navigating the present clinical trial system is a nightmare for those of us desperately looking for new treatments. Hopefully others will expand his great work to other cancers and change the outdated clinical trial identification system.
Something for pancreatic cancer? We are also desperate.
Get in touch with panda.org. They have an impressive trial search system and will help you navigate it.
autocorrect is a pain. Pancan.org
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