Tom Marsilje, who survived stage IV colorectal cancer (CRC), has joined forces with New York-based Fight Colorectal Cancer to help patients search for microsatellite stable (MSS-CRC) clinical trials.
The updated tool, now called the “Late Stage MSS-CRC Trial Finder: A curated list powered by patients,” is an update of Marsilje’s own spreadsheet that he personally curated for two years. It has since been converted into an app, developed in collaboration with late-stage patients he met online.
It is currently accepted that colorectal tumors can be classified, according to their global genomic status, into two main types: microsatellite instable tumors (MSI) and microsatellite stable (MSS) tumors.
This classification is key in determining the pathologic, clinical and biological characteristics of colon tumors. MSS tumors are characterized by changes in chromosomal copy number and generally show worse prognoses than MSI tumors. The two subtypes also exhibit different responses to chemotherapeutic agents, and have distinctive molecular mechanisms. MSS tumors generally follow the classic adenoma-to-carcinoma progression.
Because of this setting, Marsilje’s trial finder is not a comprehensive list of all CRC clinical trials; rather, it only lists those of greatest interest to late-stage patients with MSS-CRC, such as Marsilje himself.
“From my stage IV patient viewpoint, I decided I was only interested in two types of trials,” Marsilje said in a press release, explaining he only included those with a low chance of potential failure and those with the highest potential long-term benefit. “As a patient, I had no interest in participating in a trial which had both the highest risk of failure as well as limited long-term benefit, even if the experimental therapy worked as designed. I knew that I may only have one shot at a trial, so I wanted to choose that trial wisely and make that potentially single shot count the most.”
Marsilje partnered with Fight CRC in January to boost his efforts and reach more people, as well as to get ground support for the trials database. He then partnered with Flatiron Health to build the latest version of the tool. The Flatiron team built a patient-friendly online platform and automated many parts of Marsilje’s curation process.
The app searches for trials in the Clinical Trials Transformation Initiative’s AACT database — a repository of all trials registered in the United States— and refreshes results every day to include new and existing trial updates.
“For over two years, my spreadsheet has served patients (and their caregivers) and offered them a curated list of potential clinical trials for them to subsequently discuss with their medical team,” Marsilje said. “The filtered list is generated from all potential MSS-CRC patient-enrolling trials, and it is based upon parameters that are most important from the viewpoint of stage IV MSS-CRC patients. This comes from not only my own personal experience as a MSS-CRC patient, but also the feedback I’ve received over the years after helping hundreds of other patients search for trials.”
Added Nancy Roach, founder of Fight CRC: “Stage IV patients and their caregivers have a sense of urgency that isn’t reflected in the systems of research. Tom’s curating logic reflects this sense of urgency and the priorities of patients, especially patients who’ve received multiple lines of therapy. The logic will evolve over time as new approaches to treatment evolve, and we hope to use information from patients who use the tool to inform our ability to comment constructively on trial design.”