A Patient Powered Curated MSS-CRC Trial Finder

>1,000 Hits… my mind was blown away.  My cancer had returned and I was now diagnosed recurrent Stage IV.  I knew at that moment that standard of care therapies would only buy me so much time – I would need to have Clinical Trials in my treatment plan.  Being a planner, I immediately started to search the main database of clinical trials, www.clinicaltrials.gov to see what trials were possible, to start making a list to consider & keep an eye on.

2017-05_ClinicalTrials Gov_Search Results

Deer in Headlights

But even as an oncology drug discovery researcher, I was a “deer in the headlights”. I had no idea where to even start with the >1,000 hits my first search generated!  I started to go through the list.  I immediately saw problems – of course, there were not >1,000 reasonable trials to consider – my CRC search terms had pulled up many trials that were completely inappropriate.  I stopped going through the list – I gave up – this would take forever I decided, there must be a better way…

There is a very low patient participation rate in clinical trials for adult solid tumors, only about 3% of patients participate.  Especially in the age of experimental immunotherapies, I think this is an absolute travesty.  Often patients have to research potential trials for themselves.  There are numerous reasons behind the low participation rate but I firmly believe one of them is how difficult it is for the average patient to use clinicaltrials.gov to find potential trials. Even as an oncology drug discovery scientist, I wanted to give up on it: the results of my basic search were incredibly intimidating. Imagine how a cancer patient without a scientific background, often under emotional and physical strain, would feel!

I tried to think through a better way to find trials for myself.  At a very basic level, I began to ask myself a series of questions:

  • Which clinical trials would have the highest potential benefit?
  • Which clinical trials would be less likely to fail?

For point #1, in my mind, the answer was immunotherapies.  Often the odds of response are quite low – but when they work – boy can they work well!

For point #2, at first I tried to judge scientific merit.  I soon gave up.  The number of possible ways to attack CRC is too large, drug discovery is too complex – I had to simplify & not make scientific judgments.  I decided to follow basic statistics: about half of Phase 1 clinical trials don’t succeed. Experimental therapeutics that pass Phase 1 clinical trials and that have entered Phase 2 trial testing against CRC by definition had a higher chance of success.

I had my trial guidelines – I started to search clinicaltrials.gov and began to develop a list of trials I wanted to keep an eye on. The list was a mixture of immunotherapy trials that accepted MSS-CRC patients as well as Phase 2 or 3 trials (of any type of novel therapy) directed towards treating CRC. I added to it as new trials were announced – my list steadily grew…

It All Started with Friends

The Stage IV CRC patient world is tight & close knit.  We get to know each other well.  Friends started to ask me which trials I thought were best.  I always answered: I’m not a MD so I can’t give medical advice & it is impossible to know which trials are “best” because drug discovery is so complex… but here are the trials I am keeping a close eye on for myself.  I then gave them a copy of my spreadsheet.  Word of my personal list spread and more patient friends started requesting it.

As I became more and more involved in CRC patient advocacy, I came to the realization that it felt morally and ethically unfair for me and patients that “happened to be my friends” to have this information – trials I honestly thought were in the patients’ best interest to consider if they agreed with my overall trial guidelines – while other patients did not.  So I started to post my spreadsheet file in a number of CRC patient support groups online.  It wasn’t an ideal way to spread the information but it was the best I could do.

Enter Maia

Maria Cecilia Antunez is simply known as “Maia” or “Cee Cee” in the CRC online communities. From her home in Argentina, Maia has been a patient advocate online for years, helping to spread clinical trial information to CRC patients. She sent me a text asking if I would be interested in having my curated list as an App instead of a spreadsheet file.  Would I?? That would be awesome I told her!  Maia went to work and within days she had a working app.  It was simple, very grassroots, but fully functional.  I was amazed.  We decided, now as a patient advocacy team, that the App was too important of a resource to keep bottled-up in support groups – it needed to be available to the general public.  We enlisted a fellow Stage IV patient friend of ours, Jana Downing, to design a simple web page to house the link to the App.  Our website went live last January and patients loved it!

Flatiron Health and Fight Colorectal Cancer

The impact of my curated list of trials was starting to hit much higher levels than I had ever imagined.  The app was great for a grassroots effort but I knew that the potential to help many more patients was much greater.  Maia and I needed help.

Through a mutual contact I connected with Flatiron Health.  I presented the project to see if they could bring it to the “next level”.  They were immediately enthusiastic to help!  They had a “Hackathon” scheduled for March where they could devote their resources to convert the simple v1.0 grassroots app Maia had made into something much, much, more – a professional-quality app with much greater functionality!  All for free!  I was blown away by their incredible generosity!  A full description of the software engineering that went into the new app can be read here.  By chance the Hackathon took place the exact same day as my Charlie Rose Show interview while I was in New York City for a doctor’s appointment.  It is amazing how sometimes the stars align in just the right way!

At the same time, I knew that to reach as many CRC patients as possible, Maia and I needed more than our simple grassroots website – we needed an advocacy organization partner.  I have worked with Fight Colorectal Cancer for several years as a writer and science consultant – they immediately sprang to mind.  Their mission is focused on patient education and empowerment, and they have a strong commitment to research. I decided that teaming up with Fight CRC would create a perfect partnership for our curated MSS-CRC trial finder.  I contacted them and told them about the project – like Flatiron they were excited to take part.  We worked together to determine how Fight Colorectal Cancer could house, maintain and support the new curated clinical trial finder Flatiron was developing.  I was excited how the project was coming together with amazing speed!

Flatiron Hackathon

A portion of the Flatiron Health team & me at the March Hackathon in NYC

Announcing: The “Late Stage MSS-CRC Trial Finder:  A curated list powered by patients.  I am excited to announce the release of this incredible new app (thank you Flatiron Health!) of my curated MSS-CRC clinical trial list for the MSS-CRC patient world to explore!  It follows the very basic curation criteria that I follow when I look for clinical trials most interesting to me.  With Flatiron’s help, this tool is now accessible to patients in a highly-functional app – which I believe is an extremely user-friendly trial finder for MSS-CRC patients.  Because of the high “potential” benefit curation parameter, it has a focus on immunotherapy clinical trials – an area of oncology research I am particularly excited by right now. This is also an area of trials that are not easy to find through clinicaltrials.gov searching – but an area of clinical trials I know many fellow patients are also very interested in exploring! On a broader level, there is nothing “CRC-specific” about the curation methodology, I would love for it to spread to other cancer types via appropriate advocates – contact me anytime if you have questions or interest!

Today an activist dream of mine all comes together on the Fight Colorectal Cancer website… all starting from a simple spreadsheet of trials I was interested in as a patient-scientist myself…

To Life!

-Tom

22 Comments on “A Patient Powered Curated MSS-CRC Trial Finder

  1. This is very exciting. Is it of any use to patients in the UK?

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    • Hi Barbara, Yes the trial finder list is international with a number of UK trials. As we find trials (where ever they are in the world, except China), they are added to the list! Please check it out – you can easily set the search term to only “United Kingdom”. I hope it is helpful to you! Take care, -Tom

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      • Many thanks for speedy reply! I have also been overwhelmed trying to search for trials. RAS mutation and peritoneal mets are my particular issues.

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      • I just did the “United Kingdom” search and retrieved (14) potential trials for you to consider with your medical team. Of course, opening it up to a few countries in Europe if you can logistically get to them for trials (e.g. Germany) would significantly increase the number of options. For peritoneal mets, you can search for that search term as well, e.g. if you can get to Italy, a Pipac procedure trial (NCT02604784) may be interesting to discuss with your medical team.

        Liked by 1 person

      • Even more thanks! On the move at the moment but will sit down properly with this as soon as I can. Not sure that we in Europe travel as much for trials as you do but maybe I’ll be a pioneer! I had been looking at information on PIPAC coincidentally and I love Italy!

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      • Looks like the Italy trial is a no go as I also have liver met and I think they will only do peritoneal. Hey-ho – back to the drawing board. Am still responding to current chemo though and there seem to be options once this stops. Thanks again!

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  2. I’m a great believer in clinical trials. I’m alive because of a “failed” one that closed 23 years ago. I listened to IBM’s CEO Ginni Rometty as she described Watson’s role in oncology. Perhaps one day Watson will suggest some twin of mine try the same recipe.

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  3. So happy and grateful for you, Tom, and for Flatiron and Fight Colorectal Cancer work! Incredibly honoured to participate in such amazing project. Together we are closer to a cure! : )

    Liked by 2 people

    • I and we couldn’t have done it without you Maia! THANK YOU – one step closer to the cure, as each trial accrues patients to learn clinically what works and what doesn’t (and importantly figuring out why if that happens…) it all feeds back into scientific research into the next generation of trials!

      Liked by 1 person

  4. This is such a meaningful way to help the entire colorectal cancer community. Thanks to all involved, and especially to you Tom for getting the partners together. TO LIFE!

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  5. I just got home from a long trip to Sarah Canon, who insisted they would not have me travel there without an IO trial I would qualify for.
    When there, Dr. Bauer tells me that I first have to go thru all the chemo drug treatments, and since I haven’t had inrenotecan or folfuri, I have to have them first!
    Also, because I am MSS, wild kras, there are no worthwhile trials….I was also told this by Moffit, and Florida Cancer Specialists, and also, if they could keep me alive for 6 months this could radically change!
    BTW, Cancer Research Institute Clinical Trial Finders, is going thru all trials and sending me trials daily, and calling to follow thru.
    I was told by a friend in the field to go to Cancun..Hope 4 Cancer…I have a call with them this afternoon.
    Bless us all, we are a stubborn bunch!

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    • Most trials require FOLFIRI first but not all… Please check out this trial finder, used in conjunction with the other resources you are using, looking at states you can logistically get to and see what pops up! Each trial will have different rules on prior therapies etc, there is not a “standard” rule – they are all different. Best of luck! -Tom

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  6. Tom, I can’t say enough how much you inspire me. Thank you for your friendship and for sharing your optimism and strength with those of us in the patient community. Your hope is contagious – for those actively fighting as well as for long-term survivors like me. It’s been a complete honor and joy to work on this project with you and our teams, and to sort out this survivor life side by side. I think the best thing you can tell a survivor is that they’ve helped save another life with their story, expertise and passion – and you my friend have done that more than you’ll ever know. To life, indeed. 🙂

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  7. Congratulations Tom! Thank you very much for all the time and dedication you have so selflessly given and continue to give to CRC patients, caregivers and oncology teams. This tool has been long overdue and crucial in treatment planning and overall prognosis regardless the initial stage of diagnosis. I personally believe this resource is one the most important steps we can take towards improving treatment, prognosis and ultimately prevention of this disease. Without easy access to clinical trials, patient options are limited and so is the necessary patient participation in these trials to quickly and efficiently reach the ultimate goal of prevention. Thank You Tom. Sincerely, Machelle

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  8. Tom this is amazing!! So many times I have read your posts and wondered how other people could possibly wade through the info to find what the need, without the specialist knowledge you have and found myself thinking that I hope, if it ever came to it and my CRC came back I would have you in my corner!! Now everyone can have a Tom to help them out haha This no doubt will reach and help many people you are a superstar!

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  9. Pingback: Not the Most Fun Rollercoaster… but I’ll Take It! | AdventuresInLivingTerminallyOptimistic

  10. Thank you very much for your great work Dr Tom and team. You have helped uncountable number of patients to be hopeful again. May God Bless you all.

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