If anyone currently reading this is going through the same pains, my company has a non-profit project to help with just such issues. If you go to findmecure.com, and search for HNSCC, you will find the trials for all possible spellings and variants of this condition. You can filter much more easily for demographics, location, trial specifics, everything.
Also, we have dedicated experts just to help patients find the correct trial for them, for any condition, anywhere in the world, free of charge. Feel free to write me an email, petar.buyukliev@findmecure.com
We have spent considerable effort over many years to produce tools that are more efficient than clinicaltrials.gov. I share your frustration with clinical trial matching because it can be a overwhelming process for the variety of reasons you have already articulated. That said, in our search tool, you can calibrate your such much more precisely than you can in clinicaltrials.gov. I conducted a trial search that included phase 1-3, recruiting and not yet recruiting, Metastatic HNSCC (and a subset of ontological expansions) within the United States and I obtained 224 trials (containing all 5 of the trials that ultimately prioritized - NCT04815720, NCT03526835, NCT05743270, NCT03485209, NCT05094336). I performed that search and downloaded a csv of trial attributes for side by side analysis and prospect mining. That was achieved in less than 5 minutes. I will share the download upon request. The purpose of this note is to make aware that there are tools that can significantly improve elements of this arduous and time consuming process. If you are interested in more information please reach out to me at ntackes@molecularmatch.com
I saw this linked and am just catching up now. I’ve spent more than 20 years in clinical trials research, first on the site side, and now on the sponsor side. I was around when ct.gov was created, and remember the hope we had for it. However, as you note, search terms are poor at best. And even more, when putting terms in you are limited in how many you can use (so, for instance, you may have 6 descriptions for the disease, but then you may want to explain your drug mechanism, the purpose, etc., and you run out of options). This means that you may not hit the term someone is using. It’s just as frustrating for us to get the information into the system!! And the reviewers are anonymous and random. There is no set review or rules.
Thanks for sharing the fruits of all your labors with the world - it’s a great service. I would like to comment on med-onc’s lack of knowledge of trials. I think there are two factors at work. First, since most drugs don’t actually make it through the trials, the docs may feel like it would be fruitless to follow the early stage trials. I believe they do know a lot about the drugs that have made it to phase 3 and are excited about them. Second, interacting with the trial system is hard and frustrating and the incentives are to avoid it - as you’ve probably experienced. The patients in your husband’s situation, unfortunately are seeking the next Keytruda (understandably!) and success stories are becoming more common, but there’s still of lot of chaff around those needles.
Replying on behalf of Massive Bio, this is reaffirming to our ethos to embrace continuous improvement in our journey to revolutionize clinical trial matching.
It is with a heavy heart that we read the personal narrative shared on the blog by Dr. Stillman. The poignant account strikes at the very core of why Massive Bio was conceived. Our inception was born out of similar painful experiences that our co-founders endured, catalyzing a collective ambition to ameliorate clinical trial matching and awareness. Our mission has always been patient-centric, driving advancements that empower both patients and their oncologists with better, more precise information.
As outlined by the blog, our innovative SYNERGY-AI protocol was developed to encapsulate this mission. It's designed for self-improvement as technologies evolve, data proliferates, and approaches shift, with the patient at the heart of this iterative process. We acknowledge that achieving excellence is an ongoing endeavor, one that thrives on collaboration and feedback from all stakeholders involved.
Such stories fuel our relentless pursuit of refining our services.
We staunchly believe that the fusion of AI with the advocacy and insights from physicians is the linchpin for success. AI is a potent tool to structure the labyrinth of data, directing potential trial matches; however, it's the human element— the oncologists, clinical navigators, and feedback from patients, that closes the loop, making our system more robust and responsive. Our clinical navigators ensure that real-time feedback is harnessed to assist each patient uniquely.
The dialogue with the author of the blog post is ongoing, as we are keen on gleaning insights on how to further enhance our platform. Our commitment is unyielding. By working cohesively with all stakeholders including CancerX, NCI, and being recognized by entities like the World Bank, we are inching closer to our goal, each day.
In the vast expanse of the healthcare industry, it's inevitable to encounter a sprinkling of naysayers or self-defeating folks, perhaps clinging to the status quo or wary of the transformative wave we are part of, when this is clearly something we can fix with technology, better data, and proper stakeholder refinement inputs. Yet, at Massive Bio, we stand undeterred as disruptors and thought leaders, tirelessly laboring to rectify prevailing issues that encumber clinical trial matching. Our resolve is steely, our operations unceasing—every hour, every day, throughout the year. Our audacious journey mirrors the indomitable spirit that propelled behemoths like SpaceX, Amazon, Microsoft, Apple, and Google to pinnacle of innovation. Their odyssey, punctuated with challenges yet driven by an unwavering resolve, resonates with our ethos. We are here not just to challenge the conventional but to redefine it, tirelessly striving for a future where clinical trial matching is demystified and made accessible to all. The pathway we tread may be arduous, but our vision is clear and determination unyielding. We cordially invite others in this realm to not only match our stride but to endeavor to outpace us. In this rigorous pursuit of excellence, we collectively inch closer to a healthcare landscape that embodies the essence of precision, accessibility, and hope.
We extend our heartfelt gratitude for keeping us motivated to challenge the status quo and stride towards what many deem unattainable. Our endeavor to provide this service free of charge to all patients globally continues with renewed vigor. We invite you to join us in this mission, advocate for better clinical trial matching, and together, let's usher in a new era of hope and improved patient care.
This is astonishing in very way. I've sent it to the head of the American Telemedicine Association and the Digital Medicine Society in the hope they can at least turn their guns on the telehealth license issue. It's so disappointing that all those clinical trial matching companies aren't working out. Fingers crossed for you and Jake
Thanks for sharing Bess. Despite your circumstances, you have articulated very well how challenging patients access to trials is in the real world. Changes can be made but understanding of the cause / effect that creates the garbage in the first place is what we need to tackle. I would love to help specify these changes with your input. Good luck to you and Jake!
Thanks for your writing and wealth of information. I’m sure it will make a difference for many lives. My nephew is in end stage with tongue cancer. He has stopped all treatments. The clinical trial information won’t help him but it is such a gift for others who may go through what Jake is.
Hi,
If anyone currently reading this is going through the same pains, my company has a non-profit project to help with just such issues. If you go to findmecure.com, and search for HNSCC, you will find the trials for all possible spellings and variants of this condition. You can filter much more easily for demographics, location, trial specifics, everything.
Also, we have dedicated experts just to help patients find the correct trial for them, for any condition, anywhere in the world, free of charge. Feel free to write me an email, petar.buyukliev@findmecure.com
Hello, I am the CTO of MolecularMatch,
We have spent considerable effort over many years to produce tools that are more efficient than clinicaltrials.gov. I share your frustration with clinical trial matching because it can be a overwhelming process for the variety of reasons you have already articulated. That said, in our search tool, you can calibrate your such much more precisely than you can in clinicaltrials.gov. I conducted a trial search that included phase 1-3, recruiting and not yet recruiting, Metastatic HNSCC (and a subset of ontological expansions) within the United States and I obtained 224 trials (containing all 5 of the trials that ultimately prioritized - NCT04815720, NCT03526835, NCT05743270, NCT03485209, NCT05094336). I performed that search and downloaded a csv of trial attributes for side by side analysis and prospect mining. That was achieved in less than 5 minutes. I will share the download upon request. The purpose of this note is to make aware that there are tools that can significantly improve elements of this arduous and time consuming process. If you are interested in more information please reach out to me at ntackes@molecularmatch.com
best,
Nick
I saw this linked and am just catching up now. I’ve spent more than 20 years in clinical trials research, first on the site side, and now on the sponsor side. I was around when ct.gov was created, and remember the hope we had for it. However, as you note, search terms are poor at best. And even more, when putting terms in you are limited in how many you can use (so, for instance, you may have 6 descriptions for the disease, but then you may want to explain your drug mechanism, the purpose, etc., and you run out of options). This means that you may not hit the term someone is using. It’s just as frustrating for us to get the information into the system!! And the reviewers are anonymous and random. There is no set review or rules.
Thanks for sharing the fruits of all your labors with the world - it’s a great service. I would like to comment on med-onc’s lack of knowledge of trials. I think there are two factors at work. First, since most drugs don’t actually make it through the trials, the docs may feel like it would be fruitless to follow the early stage trials. I believe they do know a lot about the drugs that have made it to phase 3 and are excited about them. Second, interacting with the trial system is hard and frustrating and the incentives are to avoid it - as you’ve probably experienced. The patients in your husband’s situation, unfortunately are seeking the next Keytruda (understandably!) and success stories are becoming more common, but there’s still of lot of chaff around those needles.
I am the Co-founder and CEO of Massive Bio.
Replying on behalf of Massive Bio, this is reaffirming to our ethos to embrace continuous improvement in our journey to revolutionize clinical trial matching.
It is with a heavy heart that we read the personal narrative shared on the blog by Dr. Stillman. The poignant account strikes at the very core of why Massive Bio was conceived. Our inception was born out of similar painful experiences that our co-founders endured, catalyzing a collective ambition to ameliorate clinical trial matching and awareness. Our mission has always been patient-centric, driving advancements that empower both patients and their oncologists with better, more precise information.
As outlined by the blog, our innovative SYNERGY-AI protocol was developed to encapsulate this mission. It's designed for self-improvement as technologies evolve, data proliferates, and approaches shift, with the patient at the heart of this iterative process. We acknowledge that achieving excellence is an ongoing endeavor, one that thrives on collaboration and feedback from all stakeholders involved.
While the narrative sheds light on the complex situations most cancer patients and caregiver face, due to the complex nature of clinical trials and the unique circumstances surrounding each patient, it's pivotal to recognize the broader impact we are making. Thousands of patients are being aided through our platform. A testament to this is the positive experience shared by Bree Burks, which can be viewed here https://www.linkedin.com/posts/bree-burks-78a26040_fixclinicaltrials-patientperspective-hope-activity-7076702696220565504-VS7B/?utm_source=share&utm_medium=member_desktop
Such stories fuel our relentless pursuit of refining our services.
We staunchly believe that the fusion of AI with the advocacy and insights from physicians is the linchpin for success. AI is a potent tool to structure the labyrinth of data, directing potential trial matches; however, it's the human element— the oncologists, clinical navigators, and feedback from patients, that closes the loop, making our system more robust and responsive. Our clinical navigators ensure that real-time feedback is harnessed to assist each patient uniquely.
The dialogue with the author of the blog post is ongoing, as we are keen on gleaning insights on how to further enhance our platform. Our commitment is unyielding. By working cohesively with all stakeholders including CancerX, NCI, and being recognized by entities like the World Bank, we are inching closer to our goal, each day.
In the vast expanse of the healthcare industry, it's inevitable to encounter a sprinkling of naysayers or self-defeating folks, perhaps clinging to the status quo or wary of the transformative wave we are part of, when this is clearly something we can fix with technology, better data, and proper stakeholder refinement inputs. Yet, at Massive Bio, we stand undeterred as disruptors and thought leaders, tirelessly laboring to rectify prevailing issues that encumber clinical trial matching. Our resolve is steely, our operations unceasing—every hour, every day, throughout the year. Our audacious journey mirrors the indomitable spirit that propelled behemoths like SpaceX, Amazon, Microsoft, Apple, and Google to pinnacle of innovation. Their odyssey, punctuated with challenges yet driven by an unwavering resolve, resonates with our ethos. We are here not just to challenge the conventional but to redefine it, tirelessly striving for a future where clinical trial matching is demystified and made accessible to all. The pathway we tread may be arduous, but our vision is clear and determination unyielding. We cordially invite others in this realm to not only match our stride but to endeavor to outpace us. In this rigorous pursuit of excellence, we collectively inch closer to a healthcare landscape that embodies the essence of precision, accessibility, and hope.
We extend our heartfelt gratitude for keeping us motivated to challenge the status quo and stride towards what many deem unattainable. Our endeavor to provide this service free of charge to all patients globally continues with renewed vigor. We invite you to join us in this mission, advocate for better clinical trial matching, and together, let's usher in a new era of hope and improved patient care.
Sincerely,
Selin Kurnaz
This is astonishing in very way. I've sent it to the head of the American Telemedicine Association and the Digital Medicine Society in the hope they can at least turn their guns on the telehealth license issue. It's so disappointing that all those clinical trial matching companies aren't working out. Fingers crossed for you and Jake
Thanks for writing this out for the world, it may save many who stumble upon it. Best wishes to both of you.
Thanks for sharing Bess. Despite your circumstances, you have articulated very well how challenging patients access to trials is in the real world. Changes can be made but understanding of the cause / effect that creates the garbage in the first place is what we need to tackle. I would love to help specify these changes with your input. Good luck to you and Jake!
Thanks for your writing and wealth of information. I’m sure it will make a difference for many lives. My nephew is in end stage with tongue cancer. He has stopped all treatments. The clinical trial information won’t help him but it is such a gift for others who may go through what Jake is.
My best wishes to both of you from Canada.