This video was posted March 12, 2023
Just saw it today (April 1, 2023) and have not had time yet to watch this ONE HOUR video with the inventor of 'The Glove' .. Dr. Peter Tass of Stanford Univerity.
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it’s interesting that the trial in Oregon is through a different avenue
Is this trial being administered through OHSU or some other entity?
I believe there is a trial at OHSU this is in Eugene through synergic. The Stanford trials are separate.
okay- we only live 2 hours from Eugene so do you think that they would allow us to be in their trial at some point?
yes! Their contact information is on the photo , contact right away!
please let me know if you join
I’m 2 hours away as well
I'm very excited for both of you that you live so close! I watched the entire video and Dr Tass said they are resuming the trial June or July! Good luck!
this is now a separate trial
I have been emailing with them and I emailed them again last night and it said that the person who emailed me is out of the office until April 10th.
Do you think this is a right to try situation or just the standard clinical trial?
it’s a standard trial begun in Eugene, my appointment is May 8 elyria.kabasenche@synergicmed.com is my contact
that's very generous of you to share this contact and everybody here is excited for you and wishing you the BEST OF LUCK!
it’s been too long coming, yes I am grateful 🙏🏼💟☮️
just to clarify ... you 'have' been accepted for 'the glove trial' -- correct?
that is correct. A glove trial through synergic.
GREAAAAAAAAAAAAAT! and when do you start?
my appointment is May 8. Here’s a bit of the email:al. We are conducting a controlled clinical trial where we are testing two protocols, which you may or may not respond to and will be blinded throughout. We are committed to determining efficacy and how a variety of people respond.
two months are programmed for effective use and two months may or may not be.
My fingers are crossed for you! GOOD LUCK!
good news- I heard from them today
excellent! Keep us posted!
Did any of you get on the trial for the gloves?
PDWarrior1900
Boscoejean
no gloves for me pdwarrior 1900
Yes, I’m 40 days in to the 60 days of effective protocol after doing 60 days of placebo protocol. It’s definitely activating my brain. I think 4 hours/day is likely more than enough. At 60 days i will likely choose to use them once a day for 2 hours. Do you follow Pat Riddle on YouTube? He’s very pleased with the glove’s effectiveness on his symptoms
Have you also contacted Kanwar Bhuttani who recently joined CPHU to compare notes re your experiences with the gloves?
No, how do I contact Kanwar?
His user name is Ksbhutani12 and you can read his comments here : healthunlocked.com/cure-par...
Thats awesome news . Have they provided any insights as to when the gloves will be available to the general public? i am most interested in getting into a trial or buying them outright . Have they allowed you to reduce your drugs? Thanks kindly.
I’m technologically challenged myself! I think the next trial will be at Stanford. Also people are making gloves outside of trials. I’ve only used mucuna for Ldopa and add 1/2 tablet of carbidopa with a low dose 3x daily. No idea when the gloves will become available
sorry--my reply to this post is below. my apologies. this is my first experience with a message board. i look forward to your response.
Yes I do follow Riddle and a few of the other geniuses on HU. I appreciate all the information and advice this forum gives.
FYI…. I’m also on here as @laglag 🥊🥊
Hi,
I am a DIY builder and user of gloves. I was wondering if you would be receptive to providing an update on your clinical trial of the gloves at Synergic. I firmly believe the gloves provide benefit and want to get an understanding of when they could be on the market. Thank you in advance.
Thanks for keeping up our hope by posting information related to this promising project! I would like to see if there is a debate of what’s implicit with Dr Tass theory (Is PD a problem of excessive dopamine instead of lack of dopamine?)
Very interesting! Sounds promising! Is this going to be geared for early onset for younger patients?. Would also be interested on information too much versus not enough dopamine Chris thanks for sharing!
very much welcome! and we're all in the same boat... i've learned so much from posts here .... "one for all and all for one!"
It was interesting that he mentioned that the sense of smell and vision were improved
I hope anyone in the trial will keep us updated on how it's going.
I emailed Dr Tass's dept and got this reply below.
----
I have forwarded your message to Dr. Tass’s lab members at parkinsonsvcr@stanford.edu . They are currently in the preparatory stages of their studies and are not yet actively recruiting patients. Once they begin recruiting, they will be sending out a link in which you can register in order to be contacted regarding study participation but as of right now they are not answering any phone calls and are delayed in responding to messages due to the high volume of inquiries and requests. Please feel free to email them directly if you have any additional questions.
Best,
ALISON FRY
Administrative Associate
Stanford University • School of Medicine
Department of Neurosurgery
Center for Academic Medicine
453 Quarry Road
Palo Alto, CA 94304
alisonfry@stanford.edu
great "leg work" gaga! THANKS!
when i contacted the email address supplied above......parkinsonsvcr@stanford.edu they responded with the below survey link to fill out....
"Thank you for your interest in our research!
We are currently in the preparatory stages of our studies and are not yet actively recruiting patients, however if you are interested in being considered for any of our future trials, we ask that you register yourself by following the link below and entering your information into our patient registry (Please only register yourself once). This will allow us to determine your potential eligibility. If you are seen as a potential candidate we will reach out to you.
redcap.stanford.edu/surveys...
*Due to the high volume of inquiries and requests, we are no longer taking phone calls. It may take some time for our team to respond to your message. Thank you for your patience and understanding.
⦁For general information about the Peter Tass lab: med.stanford.edu/tass-lab'
Dr. Tass has an event scheduled for June 10th in Arizona.
facebook.com/movementdisord...
do you live near AZ? are you going?
when i contacted the email address supplied above......parkinsonsvcr@stanford.edu they responded with the below survey link to fill out....
"Thank you for your interest in our research!
We are currently in the preparatory stages of our studies and are not yet actively recruiting patients, however if you are interested in being considered for any of our future trials, we ask that you register yourself by following the link below and entering your information into our patient registry (Please only register yourself once). This will allow us to determine your potential eligibility. If you are seen as a potential candidate we will reach out to you.
redcap.stanford.edu/surveys...
*Due to the high volume of inquiries and requests, we are no longer taking phone calls. It may take some time for our team to respond to your message. Thank you for your patience and understanding.
⦁For general information about the Peter Tass lab: med.stanford.edu/tass-lab'
WHERE the HELL is our GLOVE?
Here:
orbitalcircuits profile imageorbitalcircuits
3 days ago
FYI, here is the link to my software for controlling the bHaptics TactGloves, based on what I demonstrated a couple weeks ago. I think this browser-based approach is nice for experimenting with the gloves, because you can just edit the html page in a text editor and then reopen in your browser to try something new!
Comments/edits/pull-requests are welcome!
Software: github.com/orbitalcircuits/...
Original Demo Video: drive.google.com/file/d/1Ag...
Hi K...i am new to this board and have read your posts with interest and gone to the bhaptics site you linked. i am not a very technical person but do i take it from your posts that you purchased a pair of these gloves and you are trying to mimic the vibrotactile circuits in the Tass study? if so, any luck? Thanks so much!
WOW! GREAT POST! THANK YOU!
Here are the gloves. In comparison, the "official" clinical trial is 6000 USD!!! piece of a stone axe! on that wires, controller, etc., on that Bluetooth, mobile application!!!!!!!!! Worth $300!!!
Thank God we have a genius, OrbitalCircuit, who found it and even wrote software for it! You can find it in the hacking topic!
A couple of questions bother me about the evaluation of this device. I might start another thread to ask them.
But, regarding a clinical trial
1) What is going on? There appear to be a couple of folk on this forum who are "on the Peter Tass trial". But the original trial was terminated with no reason given clinicaltrials.gov/ct2/show... , and I cannot find a replacement listed
2) Let me repeat that. I cannot find a record of a current, live, in-progress trial by Peter Tass and his team listed on clinical trials.gov - where it should be listed. Can anyone point me to an official record of this new trial, that people are apparently participating in? If not, what is it that they are doing?
3) What is the placebo going to be? For a valid trial, it would need to be indistinguishable from the real deal. What is that going to be? My brief experiments with "fakes" suggest the real pattern is pretty recognisable. Which element will be false in the placebo group? And most importantly, how does that affect the validity of any innovative deviation from Peter Tass standard by DIY projects being carried out on this forum?
If you change the frequency much, its easily heard. The sound in the lab of the journalist wearing the gloves is pretty easy to recognise. It's a B below middle C. Move the frequency out of the 200-300Hz range and you get a G below and a D# above. Thats a major 3rd. You can hear that. i would argue you can hear a semitone easily enough, with that video as a reference.
A simple 1-2-3-4 pattern repeating is obvious. As are short loops. Amplitude? Contact site? Contact point diameter? Again - assuming a fairly well-informed participant, these are not easy to make a convincing undetectable fake. But without one, you don't have a valid placebo, and you don't have a valid trial
Thoughts?
I think the trial that some people here are participating in is not the Stanford trial that you mentioned, but rather through the Oregon startup (Synergic Medical Technologies) that Tass Lab was working with. (I could be wrong, but that's my interpretation of it). There's been discussion here about the YouTube videos published by Pat Riddle youtube.com/@patriddleparki... who got himself into the Oregon study, and some people here I think also got them into it. This is referenced earlier in this thread. From what I can tell, Tass Lab plans to launch new studies in June or July this year (there's mention of that earlier in this thread).
As far as a placebo with the glove, as I understand it, with devices, there is a 'sham' portion of the trial where the vibration frequency or pattern isn't the one that's supposed to work.
Not sure any of this is enlightening but hope it helps. It's incredibly frustrating how opaque all of this development is, but I assume Tass Lab is focused on prepping the next trial and development of the treatment more than sharing what's going on with the public.
that link did not work
works now but you should delete the 'parenthesis' ... )
I certainly appreciate the reply. But it leaves a few questions unanswered
1) I understood that the original trial was terminated due to a dispute with Stanfords commercial partner. It makes sense that a new trial will be with a new commercial partner - and that might be Synergic. But...
a) Stanford own the patents - Synergic can't commercially develop anything without Stanford being on board
b) Whoever is developping it, the only point of a trial surely is to get FDA approval - and you have to register the trial for that purpose. It seems very unconventional (absurd) to pursue a trial for a product which someone else holds a patent for, and which is not FDA approved, and duly recorded
As for the placebo - yes, I understood there would be "something". My question is what? Because playing "Nelly the Elephant" in 4 channels instead of the therapeutic pattern is going to fool nobody. So which aspect can be subtly different and as a result completely useless. And are we all unwittingly building gloves which would be a perfect placebo instead of the therapeutic version?
You might be interested in my questions thread healthunlocked.com/cure-par...
Lots of good questions, here and on the other thread you started. I've wondered about the patent issue as well. I've wondered if there's at least two patents or IP - one for the vibrating glove tech, one for the software. I would assume that Tass has been the primary developer of the concept and development of the algorithm since he's been working on that for many, many years. I wonder if the Synergic has the patent on the glove tech. I don't know. More questions than answers. The Synergic website does say that they received the FDA’s Breakthrough Device Designation for the VT Touch glove.
There are a couple of other clinical trials registered by Stanford for the glove though they aren't live and haven't been updated in ages. The Science of Parkinson's blog (scienceofparkinsons.com/202... mentions them: clinicaltrials.gov/ct2/show... and clinicaltrials.gov/ct2/show... and clinicaltrials.gov/ct2/show...
My concern with each of these is that they each say only 10 participants. That seems way too small to me to get FDA approval anytime soon.
Somewhere I saw that Stanford is working with a potential partner to get the gloves to market faster once it's approved at that Google co-founder Sergey Brin's foundation is working with them to help on that. Just another nebulous data point in this ongoing mystery though.
This comment on the YouTube video Twitchy Woman did with Tass implies that the new industry partner is someone other than Synergic: "“Stanford terminated the collaboration with Synergic Medical Technologies, Inc. in September 2022. Currently, Dr. Peter Tass’ lab is developing a next generation glove system together with experienced industry partners. New studies will commence at Stanford in July 2023."
That would seem to confirm the current glove testing are neither clinical trials nor part of peter tass stanford research. Those will start in July.Tass & Co hold the patent for the concept of the therapy. 9592384 is for "Method for the desynchronization of neural brain activity" and the holder is Forschungszentrum Jülich GmbH who are not short of a few quid to protect it
Nice working tracking down the patent. I had thought of trying that but hadn't made the time and effort yet. It seems that the patent titled "Systems and Methods for Neurofeedback-Triggered Therapy for Neurological Conditions ", Publication number: 20230131710, has a date of April 27, 2023 listed as the publication date and = Applicant: The Board of Trustees of the Leland Stanford Junior University. Makes me wonder if that means they were just recently granted the patent and if so, if they were waiting for that to proceed.
patents.justia.com/inventor...
Tass has earlier patents granted. I think he's pretty watertight. There's clearly a fairly toxic atmosphere with synergic who I assume are trying to get device approval and launch it. It's the land of litigation that side of the pond but I can only see it ending in tears. The worry is that the legal nonsense will further set back universal clinical availability.Reinforcing my ambition to build a successful device, so I don't have to sit around waiting for something that could be benefitting me today
Joining the conversation very late because I am just getting up to speed. Yes, I am a Parkie. I am stunned that Synergic would put this statement in their January 2024 newsletter(found on their website) if they did not feel they are not constrained by the patent. "The device you see in these pictures will be the device commercially available if we are successful wih FDA clearance." Somewhere I believe I saw that the University of Oregon is an investor. You would think that any decision and announcemenet like this would be reviewed an approved by them.
Also the General Manager at Synergic looks to be very educated, intelligent and experienced. She must have a plan. If you are receptive I would welcome the opportunity to communicate with you directly. I am coming to the conclusion that a DIY solution needs to be pursued.
it's a puzzle. Their statements totally ignore Stanford and Peter Tass. And yet they built his gloves to his specification. Tass now has to avoid new disclosures - silenced by Stanfords legal department. Stanford hold a set of pretty serious patents. The patents are for the idea, the concept, Peter Tass research - and unless Synergic have bought the rights, which one might expect them to mention, they appear to be stealing them. Maybe the answer is Synergic will launch, and Stanford issue a "cease and desist" which is probably not great PR, and there is a fairly quick settlement based on a royalty payment.
Synergic have said that is the glove they plan to launch. I havent seen any mention of a price. My estimate is between $5000 and $10000 without a royalty. Probably around $7000. So, maybe $10000 with a $3000 royalty to Stanford
Its likely to be first to market. But Tass and Stanford clearly view it as a crude "proof of concept". Their new glove, featuring some monitoring and feedback mechanism is likely to be more therapeutically configurable and effective
It's nearly February 2024 and not a peep from Tass and Stanford about the new glove, first mentioned in May last year. It's not going to be quick
Potentially complicating matters further, the patent is held by a German company
Gretap AG Zug
patents.justia.com/patent/2... patent in simplier terms
I wouldn't want to be in the positon of sueing Synergic to keep a breakthrough life saving device off the market. Not positive PR.
Tass is a genius but is so focused on the glove improvments and not a product launch. Synergic seems to have made excellent progress but may get stopped in its tracks.
I have PD and I can't wait. I am gathering information and networking to figure out the best way to build gloves.
It is my understanding that you built gloves. Would you be willing to discuss this with me? I will do all I can to keep it brief and painless. Do you have a write up of this on the web?
I look forward to your response.
I think it would be a bit of a stretch to call the gloves "breakthrough life saving devices". It's a bit murky but I think Synergic haven't made excellent progress. It is far from impossible that most (many anyway) did better with the placebo than the magic real deal. At least 2 on the synergic trial on this forum reported that.
There is a tendency to watch press videos of Kanwar Bhutani, and assume that is conclusive proof of universal benefit. It is still very much an experimental device. Most of the research is mathematical theory, or some limited clinical experience with DBS
For vibrotactile stimulation , Stanford have maybe trialled about a dozen patients using "compassionate use exemptions" - and conducted 2 brief open label trials, interrupted by Covid, with fairly mixed results. We are talking 8 individuals in total in the trials.
I have PD and couldn't wait either, but was quite clear this is experimental and might be a waste of time, or might do more harm than good. I have built some gloves and use them regularly (currently the Mk4 version). I have published a great deal on the forum about how I built them (search my posts) , and I am happy to share that information, but have a strong preference for doing it publicly. I have had nearly a dozen individuals contact me by chat, and pretty much they all ask the same questions and get the same answers.
I am planning a "Mk5" version of the glove - mostly because my Mk4 is a bit delicate and I want 2 sets so I can take time to mend them properly. I am really busy at work until 31 January. I should get properly stuck into Mk5 after that, and plan to try to produce a more organised report on how they are built. Several people are waiting for that.
Mine is a bit of an odd-ball build. I believe it works very well, but it's hardly the most slick or commercial. It reflects my love of gadgets, very limited engineering ability, and available audio equipment - and an initial concept of a friend with a lot of maths and engineering skill. But like the Irish farmer in the depths of rural Ireland answered a lost tourist who asked how to get to Dublin- "If I was after getting to Dublin, I wouldn't start from here"
Happy to talk in February - and share stl's , audio files, Mrs WTP's sewing patterns...
I am new to this board. I have PD and am trying to apply to be in one of the clinical trials for the glove therapy. I have read through this thread with great interest. does anyone know the present status of the trials by Dr Tass or the company Synergic? I am in Toronto Canada and I would like to take steps to have the trials also commenced here. if anyone has any ideas as to how I might accomplish these goals i would be most grateful for your advice or comments. I have tried to reach the Stanford team without success. Thanks kindly.
I could be wrong but I believe the trials are only in California and Oregon. Just 'search' for Dr Tass or 'PD gloves' on this forum for more answers
Hey PDW, thks for the reply. I agree that is where they are ongoing but expect there will be other trials and I would like to get them to trial it up here in Canada also...if its not a double blind then I would even consider moving there for the duration of the study. really great information being exchanged here. i was just on WTP's threads and very informative..especially the gut microbiome thread. thanks for all you do on this. looking forward to reading further...
the only active trial I'm aware of is in Oregon. I think this is unlikely to be extended. Synergic have applied for FDA fast track and if they are successful will launch the product commercially without need for further trials. The issue for this company is likely to be patent infringement since the patents for this technology are held by Stanford University, and it would appear that Stanford and Synergic have fallen out.
Peter Tass has talked of the Stanford trials extending possibly to Europe but things seem to take a long time at Stanford. In my experience having been diagnosed with Parkinson's disease over five years ago, things happen frustratingly slowly. This is why some of us have chosen to make our own gloves
pray do tell me more!!!! do they work? if so how do you do it? in so far as the legal fight is concerned it would be nothing new, One would think that the possibility would get the Tass group on the move to get it done.......btw i just started mirapex a few days ago to my leva/carba dopa and entacapone....whats your cocktail?
i'm wearing the gloves now, for my morning session. which means i am typing with my thumbs. i take 1.05mg Mirapex (generic pramipexole actually) slow release and C/L 10/100x2 tds
Thats sounds really promising. I am on C/L 2 PILLS 5 TIMES PER DAY, ENTACAPONE 1 PILL 5 TIMES DAY, JUST STARTING MIRAPEX 1 PILL 3 TIMES PER DAY. So that amazing you are on such low doses.I would really like to reduce the drugs if possible. Do you think the gloves are working for you? if so I would ask that you please help me try to get a pair also to use pending the release of the ones that may be released after the appropriate trials are completed. I would be most grateful for your assistance. i look forward to hearing from you.
I was on that drug regime (1.05 Pramipexole LP, 2x10\100 C/R tds) before using the gloves, although maybe in need of increasing it just before using the gloves. 10/100 is the only available form of immediate release C/L in France. I suspect, if I had been in the UK it would have been 1 25/100 CL instead. But nothing to do with the gloves, except that
without the gloves I think I would have been looking for more help from drugs. I had become stiffer and slower, was struggling to finish the easy daily dog walk, in particular felt wooden in the neck and shoulders and "chin-down stooped", and getting a series of dystonias and "discomforts" particularly in my left leg. And tight painful, biceps.
I would be unable to help you get a pair of official gloves, any more than I was able to do that for myself. It's not that difficult to make some - the hardest part for me with my gloves would be the sewing of the gloves themselves - and I delegated that to my wife. Mine is a slightly odd solution borne out of the idea that it would be easy to mock something up using audio transducers and an audio signal source. The gloves are fine, but the boxes of tricks feeding it are not the most elegant of solutions. Although they work just fine for me.
There are a number of builds described on bb.f2heal.com/viewforum.php... although it appears moribund
If you are serious about wanting a "Stanford glove" - one like those used by Kanwar Bhuttani or even Pat Riddle, then I would avoid the cheap and cheerful, easy to implement haptic solutions, which are the ones most commonly reported. They might work to a greater or lesser extent, but they are fundamentally anathema to the fine-focussed desynchronisation plans Dr Tass had devised, based on trying to signal exclusively with a small tight group of FA2 pacinian corpuscles on each fingertip. From my point of view, I wanted as closer copy of the "real deal" as possible.
Well
i did before the gloves. currently 1.5 C/L tds but thinking of cutting to 1
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