scienceofparkinsons.com/201...
The Cure Parkinson's UDCA trial is scheduled to end soon I believe (2021) making this 2018 article relevent now.
The Minnesota trial
scienceofparkinsons.com/202...
TUDCA returned zero results on MJFF
UDCA returned many results on MJFF but a quick look could not find relevent results. (I looked quickly)
Once the Cure Parkinson's UDCA trial ends, assuming it went well, what can we do to support getting the next phase going ASAP? Funds? Awareness? Trial participants?
It’s one of the ingredients in restore gold
The Sheffield based uk trial was due to end in may 2020, and appears to have ended in September 2020. It doesn't seem to have reported results yet. Maybe covid19 has been disruptive. Usually it's a sign of poor results. I have emailed the trial coordinator for more information. I'll let you know.
Assuming it went well sadly runs against the grain of most of our previous experiences, but here's hoping
Thank you. And yes, "assuming it went well" is hard to sustain given all previous experiences. But if we think we will fail, we will. Trite quip that is but without hope all is lost.
Wishful thinking most likely but maybe they are waiting for other UDCA studies to end before announcing Sheffield?
Why testing something available in OTC Restore Gold?
"Assuming it went well" is dangerous , if not necessarily in the toxic sense, in the wasting money on useless supplements sense. There are countless examples on here of people learning of some new research on fruit flies or round worm, or mice, which is suggestive of a benefit and rushing out to buy the product. Usually it is something which might slow progression and would need testing over an extended period - but is trialled for 3 months and abandoned when no symptomatic relief is observed.
"Hoping it went well" is perfectly legitimate. Hopefully , we'll find out soon. IF it went well (and lots don't) I guess the first step would be to find out whether there are any further trials planned.
Regarding Restore Gold - it is $99 for 480 capsules -on a daily dose of 4 tablets a day - giving 1200mg of TUDCA per day. The sheffield trial was 30mg/Kg. At my normal 85Kg that would be twice that amount 2550mg. That's 8 Restore Gold a day. And maybe it does nothing at all for PD progression
At least we can hopefully assume the TUDCA in Restore Gold is synthetically manufactured. The naturally occuring form, popular in Chinese medicine is either extracted from live bears on “farms,” where bears are kept in small cages and are subjected to either perpetually open wounds or to constant invasive surgery or wild bears are hunted for their gallbladders.
"Assuming it went well" is a phrase I will abandon. I get it. Thank you for the TUDCA info.
Why is it that 15 repurposed drugs have been identified as having the most potential but only a few are being tried at a time? I believe I read 15 out of 40 are "high priority." Is it lack of resources/funding? Too few researchers to facilitate the trials? Why isn't more done simultaneously? This could be interpreted as being ungrateful for what is being done. I am immensely grateful for the repurposed drug trials that are being done. They are our best hope given the shortened trial time needed since a new pharmaceutical could take 15+ years. Is that correct? What can we, PWP do to help with promoting and speeding up the repurposed drug trial process?
The short answer is "I don't know". I'm a punter, like you, albeit with 3 years more forum experience under my belt
I think lack of resources / funding is the likely answer. Funding is always going to be finite, and therefore prioritisation decisions will always be being made
Someone has to try to identify the BEST prospect - but there is no guarantee that they have polished their crystal balls well enough. In 3 years I've called it wrong many times.
In a way this frustration is a good thing. There is LOADS happening in Parkinsons research since I was diagnosed. Much more than say 20 years ago. But it means there are loads of frustrating failures, and loads of frustrating unstarted possibilities
15 years is probably typical of the time from first discovery of a potential new drug molecule to pharmacy shelf availability. Repurposed drugs can cut that time frame because you can skip the animal trial phases - as the drugs are already licenced for use in humans
Coming back to "Assuming it went well" there are plenty of drugs showed great promise in vitro, or animal studies, or phase 2 clinical trials , and then didn't make the grade. If only we knew in advance which they were going to be - hindsight is always 20:20. The list includes
BIIB054 - the 2 year phase 2 SPARK trial I participated in
Isradipine (3 year trial - repurposed blood pressure)
Simvastatin (3 year trial - repurposed statin - cholesterol)
Deferiprone (3 year trial 2017 - repurposed iron chelator **)
** not sure whats happened to that one
Probably $20million - $50 million "wasted" just on those 4
Then check out the Bristol GDNF trial. When I fantasise about winning the Euromillion lottery and fully funding a trial personally - this was the one I picked. But it looks like its turned out a bust
Others that caused a recent buzz are
uq.edu.au/news/article/2018...
clinicalomics.com/topics/pa...
I think someone has started a small trial for Terazosin in PD - but it's another one of those headliners with journalist quotes like "...If these results are confirmed through further investigation, especially a randomized clinical trial, terazosin may provide neuroprotection and potentially prevent—and not just manage—Parkinson’s disease.”
We can try to raise funds. I suspect in the final analysis, most of the time, it boils down to money. But it needs millions.
Probably the 2 areas most on the forum would like research completed on as soon as possible are:
iPSC human trials
PTT MRI Fus - the treatment at Sonimodul being rolled out internationally instead of confined to a private Swiss clinic
But we're talking big ticket numbers. Aspen Neuroscience have raised $70 million to cover the preliminary clinical trials
It's a challenge
🙂
Thank you for the links. (I should be homeschooling my kids but this is far more interesting than 5th grade math corrections) I agree with iPSC human trials
and PTT MRI Fus
as being the research most desirable to be completed ASAP. Although slow, I get the impression (not just from on here but phone calls I've made) that there is adequate push behind iPSC. Fus, at least there is Switzerland.
So that leaves the hope of disease slowing...
do you and others who have been at this for years and research extensively, have thoughts on what we can do to ramp up the search?
I'm in the US so I know even less of how the system works in the UK than in the US. But CPT is at the healm of pursuing repurposed drugs, right?
BTW, I'm not just asking all these questions of everyone to squirrel away the info for myself. I'm damn determined to do something with the info. This is a burn the boats situation although we were dealt the burnt boats.
This stuff is extracted from bears? If that is true, then get a sense of proportion, it will never happen unless, first off, it has efficacy, then effectiveness, then can be synthetically manufactured. Otherwise, this is a pipe dream, emphasis on the word dream. I emphasize that word, because that word is a synonym for not real.
It was originally extracted from bears. It is still in traditional Chinese medicine. The stuff you buy on Amazon or find in restore gold is synthetically manufactured in a lab. But we know how some people prefer naturally sourced even when chemically identical. Don't mention levadopa from macuna
What is the connection supposed to be about PD, it seems like its use is in stopping abnormal blood vessel growth disturbing the retina.
healthunlocked.com/api/redi... showing mitochondrial protection, inhibition of apoptosis , potential for slowing disease progression
Please see the Science of Parkinsons article in the post. Don't worry about the bears.
re the bears
animalsasia.org/us/media/ne...
The medical trial being undertaken by Cure Parkinson's, which is the subject of this post, does not involve bears. Chinese medicine does which is not the subject of this post. It is a valid animal rights issue of course but it does not pertain to the Parkinson's studies being undertaken.
good. thnx. I took the stuff for a year three years ago, but of course didn't notice any difference.
Restore gold is 4x4 per day or 16. 300mg each dose of 4 . Yes 1200 per day. 32 would be a lot to swallow!
The ambroxol trial took 18 months from the apparent finish to publication. these things are way too slow.
Why? Why does it take so long? Too many coals in the fire? Lack of funds? Lack of interest? Do PWP ask or just wait it out? The reasons need to be identified.
I dont know the answer but peer reviews seem to be very slow when it's not run by a pharma company
We need to find out why and what can be done about it. Is it funding, lack of motivation, lack of manpower? Thank you for bringing this to my attention. It's another piece of understanding how this system works.
Ambroxol is a dead end anyway, except for symptom relief.
Why? Based on what? Please elaborate or provide links proving that. Thank you
All of the above. Thank you for your support.
Why was/is UDCA being tested instead of TUDCA? And it's available over the counter already?
I just saw on Parkinsons.org that on March 25th at 2 P.T. they are having a program on "demystifying research". You need to sign up to get the link. Parkinsons.org also had forums where PWP could discuss issues. One topic that we had was on "tudca" and the research that was being done in England. I haven't been on the forum in a couple of years so I don't know if there was anything new
Thank you for this. I will look in to it.
Hello, I'm sorry to ask but I am not able to find the "Demystifying research" program.
I had gotten the link at the last minute. By the time you looked for it the link may have been deleted.
New trial platform could accelerate finding a cure for Parkinson's disease
SoPD blog post from Simon on the recent results from the NADPARK trial of nicotinamide riboside (Niagen)
Cure for Parkinson's - neverending story 
No cure for Parkinson's
What are your thoughts on RELYVRIO previously known as AMX0035? Could it benefit PD patients as well?
