[CharlieDigital]

    > The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. 

Interesting perspective here.

The FDA maintains an open database of clinical trials that is accessible over at https://clinicaltrials.gov and they have an API available as well[0]. A separate group called the Clinical Trials Transformation Initiative (CTTI) out of Duke maintains the AACT database[1] that is a nightly export of the FDA database to Postgres (useful for anyone that wants to do data analysis on clinical trials).

A writeup here about the background of this database for anyone interested: https://www.linkedin.com/pulse/bestworst-kept-secret-data-re...

There are a few companies in this space that provide patients a way to find clinical trials and most regional healthcare systems will have a web page dedicated to listing their ongoing clinical trials.

For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.

[0] https://clinicaltrials.gov/data-api/api#extapi

[1] https://aact.ctti-clinicaltrials.org/

[ryandrake]

I had a friend who suffered through Parkinson's Disease, and he actively sought out clinical trials and any kind of experimental treatment. His attitude was: "I'm most likely going to wither away and die from this thing anyway, so I might as well be a guinea pig and provide data to the scientists on my way out."

[jseliger]

For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.

Thank you for making it. From what I've seen and experienced, the problem has been "garbage in, garbage out"—that is, there isn't sufficient data posted publicly on clinicaltrials.gov to figure out which trials are best and which are actually open and available. My wife wrote "Please be dying, but not too quickly: a clinical trial story. A three-part, very deep dive into the insanity that is the 'modern' clinical trial system" on using the system, and the actual experience of it: https://bessstillman.substack.com/p/please-be-dying-but-not-...

To figure out what's actually going on, we've had to make a lot of appointments and talk to oncologists to understand what is available and what isn't. The AI companies whose systems we tried missed the better treatments (e.g. BCA-101, or petosemtamab / MCLA-158), although we did not try yours, so perhaps it's capturing material others aren't. "Phone calls and appointments" are how I wound up learning about Seagen / Pfizer's antibody drug conjugate (ADC) PDL1V: http://jakeseliger.com/2024/04/22/the-emotional-trial-of-cli... (which appears to be working right now, albeit with side effects).

Right now, keeping a true system up to date would require a lot of phone calls, along the lines of VaccinateCA: https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.

[CharlieDigital]

The current use case for Zeeq AI is really focused on monitoring for new trials or updated trials and not so much for finding trials at the moment.

Your best bet in that case is the AACT database which is pretty accessible if you have a basic knowledge of SQL.

The main gap as you identified is that the trial information in CT.gov is quite sparse and not necessarily deep enough so a true system would need to perhaps also crawl first party sources (e.g sponsor websites) or research papers to find more information.