Community Rapamycin Trial?

It seems we have enough people using Rapamycin and getting blood tests and enough technical people and doctors who could analyze data that it would be possible to run our own trials on dosages and frequencies. Of course this would rely on self reporting and lab results would come from different sources. Would this be possible?

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Yes - I’ve tried to get people interested in this idea because I think its likely the best way forward, given how slow the efforts are going on legitimate/well-funded human clinical trials for longevity compounds are going… its going to be years before we see much. Nir Barzelai has spent the past 5 years trying to get the TAME studys going, and its still not even funded fully or started yet.

I’ve touched upon this idea in these posts:
Here: The n-of-1 Clinical Trial: For Longevity Drugs?
and here: Poll: Would You Participate in a Higher Rapamycin Dose Clinical Trial?
Here: What Questions Do You Have on Higher Doses of Rapamycin, 60% Remaining Life Expectancy Improvement Study?
Here: Ideas on Protocols for Testing Higher Rapamycin Doses

In an ideal world we’d get some partner in Academia to work with to lend some structure and legitimacy to the effort, but if not, we probably have the expertise here to organize a rudimentary effort.

The dosing issue is obviously a good starting point - people seem to be testing very different protocols, as well as higher doses, so perhaps we can cover all of these approaches.
In the future I’d like to see it extended to other compounds… acarbose, SGLT2 inhibitors, a17 estradiol, etc.

I have talked to some researchers who are interested, and some potential funders, but that takes longer and perhaps we start with something simple and then ramp up when interest and participating suggests some sort of critical mass.

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I for one would be happy to provide my dosing and bloodwork data, but I take such a boatload of different drugs and supplements and have a rather complicated dosing schedule, it just doesn’t seem like it would be of value.

If that’s not a problem for the study design, count me in.

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Ha, ha ditto. :laughing: I couldn’t possibly take all of the supplements I have on hand, so, I rotate them and select, from the current trend of whichever way the wind is blowing.
You know, today’s fad supplement is tomorrows, poison and vice versa.

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I think that with regard to all of us trying to understand the impacts of different dosing levels and protocols of rapamycin, the key issue is not so much what else you are taking, but the issue is that you need to hold constant those other supplements, etc. , while you are doing a dosing change in rapamycin. Only in this way can we understand if the change in rapamycin dose/protocol is behind any changes in results or blood work, vs. some other change you may have made.

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Spot on RapAdmin. You have to keep everything else the same as your baseline as you make only one change to Rapamycin dosing so you can compare the difference.

Seems like some people are considering taking a 1 mg a day regimen shortly. It may make sense to get a cohort of people together to stop taking Rapamycin, establish a baseline, and then start a daily 1 mg dosage to see what happens. Just a thought…

Maybe someone can analyse all the data from those of us with baseline stats before we started Rapa. Is it possible to create a repository for that sort of data on this website?

Why not start with something simple like a journal area where individuals can post their protocols and experiences and allow the community to ask questions / provide advice? Could even ask journalists to complete a detailed questionnaire prior to starting the journal and periodically after that. Allowing journalists to select what they want to make public is important consideration too. I will be getting blood work on Monday and plan to begin my Rapa journey soon after that and would be willing to share via a journal and questionnaire.

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We’re all taking so many things, at different dosages, on different schedules- plus, what we’re taking is in a state of flux ++ nobody wants to be placebo= the worst trial ever!

That said…

If somebody is talented enough to create a spreadsheet where we can enter our variables, we might break thru the noise on things like CRP and other important markers. Blood work gets posted to the forum now, but none of it is being compiled. We’d also create data to show, for example, the difference between the Rapa only group vs Rapa+Acarbose vs Rapa +Acarbose+ SGLT Inhibitor on LDL and other markers.

Then, when something like a17 estradiol comes available, we might see early adopters have some markers diverge.

idk, just spitballing!

We’d obviously need enough participants and we’d all need to be on the same screening schedule (quarterly?). If we had enough people, I wonder if we could negotiate a group discount on the testing thru Life Extension or whomever???

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I’m stunned! With all the verbiage on this site, re high scientific study standards, you would want to do a study that is not only not even single blind, but the participants are not only in favor of Rapa, but mostly self-medicating with Rapa & other Rx. Aside from participant bias, there would be no reason to think results would carry-over to any more “natural” population.

I had previously suggested --maybe on Age-Reversal – that in situation where one has a partner, that person could put together the Rapa, & not only try different doses, but also try placebo. There are many studies, showing the power of placebo effect, but I doubt any on this site would give-up the surety of taking real thing.

FYI, I am some-what joking re above, as site so firmly rejected my “natural” more holistic approaches. Yet, some real issues regarding above.

Perhaps another approach: pay Dr. Green for researcher to go thru his 1,000 patients records on Rapa, & put together summary data. Likely would also help Dr. G & his patients.

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I had discussed clinical trials with a person few months ago who founded a cancer institute and has connections to doctors or patients who might be willing to experiment with it in certain contexts. But I had some issues come up in life and also got busy with my work, so I had put off thinking about it. The key would be to find a good question to ask, where rapamycin could help a bunch. I hope to pick back on this by the end of this year.

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You may be somewhat joking but you’re absolutely right. Any study from this group would have so many confounding factors that it would probably not be useful.
I was going to be in a study, but then turned in down as I didn’t want to blindly end up in the control group.

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