Tom Marsilje, Ph.D. and Fight Colorectal Cancer release a new-and-improved tool that helps late-stage colorectal cancer (CRC) patients search for microsatellite stable (MSS-CRC) clinical trials sorted with a patient’s point of view in mind
Stage IV Colorectal Cancer Survivor Dr. Tom Marsilje, known to many as “Dr. Tom” or the “Currently Incurable Scientist,” released version two of his microsatellite stable colorectal cancer (MSS-CRC) clinical trial finder tool today, now called the “Late Stage MSS-CRC Trial Finder: A curated list powered by patients.” For over two years, Marsilje has personally curated MSS-CRC clinical trials and shared them through a spreadsheet, later converted to an app, with late-stage patients he met online. He partnered with Fight Colorectal Cancer in January 2017 to amplify his efforts and reach more patients, as well as secure curation support for the trials database. The tool can be accessed at TrialFinder.FightCRC.org.
The new-and-improved Late Stage MSS-CRC Trial Finder is an update of Marsilje’s spreadsheet. Flatiron Health, a healthcare technology and services company focused on accelerating cancer research and improving patient care, built the latest version of the tool, turning Marsilje’s dream into a reality.
“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,” said Marsilje. “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.”
As part of Flatiron’s latest internal hackathon, a team from the company not only built a patient-friendly, online platform, but programmers also automated many parts of Marsilje’s curation process. The content of the app is based on an automated search that hits AACT, a publicly available repository of all trials listed on ClinicalTrials.gov, that is maintained by the Clinical Trials Transformation Initiative (CTTI). The search is refreshed each day for new and existing trial updates, and is then monitored by Marsilje and long-time research advocate Maia (Cee Cee) Walker. Together they systematically use Marsilje’s logic model to review each trial, and post only the trials most relevant for late-stage, MSS-CRC patients to the Trial Finder website. They’re currently working with Fight CRC to train additional patient advocates who will help power the curation process.
It’s important to note that the Trial Finder tool is not a comprehensive list of all CRC clinical trials – only trials that may be of greatest interest to a stage IV patient with MSS-CRC (such as Marsilje himself) and based on Marsilje’s review criteria, are included.
When commenting on which trials appear in the Trial Finder, Marsilje explained:
“From my stage IV patient viewpoint, I decided I was only interested in two types of trials: 1) Trials which had a “reduced” chance of potential failure and 2) Trials that had the biggest “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!”
This approach to curating a list of clinical trials is innovative, as it focuses on underscoring the patient point of view, looking specifically at the relationship between patient values and the desire to find clinical trials with meaningful impact. This effort, led by Marsilje and research advocates across the country, illustrates that patients are keenly aware of the role clinical trials can play in their lives as they search for better, more effective treatment options. Social media and information on the web have changed the game in cancer research.
“Stage IV patients and their caregivers have a sense of urgency that isn’t reflected in the systems of research,” said Nancy Roach, founder of Fight CRC. “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.”
Powered by patients, goodwill and talent, the tool was built and designed during Flatiron’s most recent internal “hackathon,” a two-day event that provides Flatiron employees an opportunity to take on a grassroots side project outside of their daily work. These quarterly hackathons have been a part of Flatiron’s tradition since its founding almost five years ago. A team from Flatiron chose to partner with Marsilje and Fight CRC for one of their many projects in this latest hackathon, which they blogged about here.
“The Flatiron team includes many exceptionally talented engineers, data scientists, product managers, and oncologists, and we all have one thing in common: we are all eager to increase the number of cancer patients who participate in cutting-edge research,” said Vineeta Agarwala, M.D., Ph.D., and director of product management at Flatiron Health. “From the very first time that we spoke with Tom, we were inspired by his passion and focus to help fellow cancer patients. We immediately realized that our collaboration on the Late Stage MSS-CRC Trial Finder could have a direct and immediate impact on stage IV colon and rectal cancer patients and their families, which was the driving force behind our decision to be a part of this project.”
Flatiron created a robust platform with search boxes, tool tips and printable reports to meet patient needs. While most of the software build was done over the course of the two-day hackathon by Flatiron, the full project was completed in three months, with Fight CRC’s support through volunteer time advancing research efforts.
Those using the tool must be aware of its limitations and understand the disclaimer that reads:
The information contained in this website is not intended to recommend the self management of health problems, medical conditions or wellness. It is not intended to endorse or recommend any particular type of medical treatment, physician or treatment facility. Should any reader have any healthcare related questions, promptly call or consult your physician or healthcare provider. The information contained in this website should NOT be used by any reader to disregard medical and/or health related advice or provide a basis to delay consultation with a physician or a qualified healthcare provider. Fight Colorectal Cancer disclaims any liability based on information provided in this website.
All patients are encouraged to discuss their clinical trial options with their medical team.
“To facilitate a discussion with a patient’s medical team, the trial finder supplies linked scientific and medical information that explains how the experimental therapeutic is designed to work and/or presents preliminary clinical data,” said Marsilje.
For more information about the story behind the tool, visit Marsilje’s post on his blog, “Adventures in Living Terminally Optimistic” and the tool’s FAQ. For more information on clinical trials, visit FightCRC.org.
About Fight CRC
Fight CRC is a national nonprofit advocacy organization fighting for a cure. It was founded in 2005 by Nancy Roach, a nationally-recognized patient advocate who witnessed the need for colorectal cancer advocacy after her mother-in-law’s diagnosis. The organization plays an important role in rallying colorectal cancer advocates to action. Fight CRC is known for activism and patient empowerment throughout patient, academic, political, scientific, medical and nonprofit communities. With a mission focused on advocacy, research, patient education and awareness, the organization serves advocates in every state of the U.S. and many others around the world. Fight CRC is a 4-star charity by Charity Navigator and 93 cents of every dollar donated goes directly to colorectal cancer programs. To learn more, visit FightCRC.org.
About Flatiron Health
Flatiron Health is a healthcare technology and services company focused on accelerating cancer research and improving patient care. Our platform enables cancer researchers and care providers to learn from the experience of every patient. Currently, Flatiron partners with over 265 community cancer clinics, three major academic research centers and 11 out of the top 13 therapeutic oncology companies. Flatiron is backed by Google Ventures, First Round Capital, Roche and others. For more information, please visit www.flatiron.com or follow us @FlatironHealth.