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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:
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.