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Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

Hi Juan ,I'm with the BTA ,will keep looking in on this ,like London girl I to won't fit the criteria either .
Good thinking on your part writing to them .
@Marlene
@LondonGirl I'm not sure how long you had your T but if it's in the time frame they are seeking I would still apply and have the evaluation performed by them. Some people have posted responses from autifony and they clearly state that they will reevaluate their inclusion criteria if they are unable to select people with their current requirements. At the very least they can keep you on file for when they do actually expand the trials.
 
Hi Rube ,yes maybe that's a good thing to do ,my husband ( 30 yrs T ) agreed when I told him your post .
Nothing to lose he said ,have name on there paper work ,were in UK to .Thanks Nothing ventured nothing to gain ,saying goes ,can but ask .
 
More info from Peter Harris @ Autifony. I asked him if they had combined both trials. His response below:

Hi,
Still two studies - ARHL in the US and tinnitus here in the UK.
Let's hope you are eligible to get on study when things open up. And let's hope that AUT00063 does something positive - we won't know the results until the study is done.
Best.
cleardot.gif


Peter

So it looks like both are still happening.
 
Sorry if this is a dumb question. I want to register for the autifony trials in the UK. But will I see the link for the recruitment trials for autifony on their website or on the NHS website. I understand that they are going to start recruiting soon and I just wanted to know where to go to sign up. Will the link or trial recruitment be starting in the next few weeks or is it possible to register now with them for these trials.
Please if you can help me or send me the link as you are all much more knowledgeable than me with this....
many thanks
 
Hi Rube ,yes maybe that's a good thing to do ,my husband ( 30 yrs T ) agreed when I told him your post .
Nothing to lose he said ,have name on there paper work ,were in UK to .Thanks Nothing ventured nothing to gain ,saying goes ,can but ask .
@Marlene best of luck. please provide us minute by minute updates if you are selected :)
 
More info from Peter Harris @ Autifony. I asked him if they had combined both trials. His response below:

Hi,
Still two studies - ARHL in the US and tinnitus here in the UK.
Let's hope you are eligible to get on study when things open up. And let's hope that AUT00063 does something positive - we won't know the results until the study is done.
Best.
View attachment 3413

Peter

So it looks like both are still happening.
i wish he would explain why they are not doing the tinnitus study in US also.
 
Rube will do ,will contact them see what they say to me ,like someone just posted ,why isent the US doing this also ,end of day we all suffer from this ,I do believe a movement is on the go,got that hope ,even if not all get on it .
The day will come when T is a word never spoken in such depths as on these sites .
Just got to keep on believing .
 
@Rube, @Marlene One word: money. @attheedgeofscience explained many pages ago that companies like Autifony are not big pharmaceuticals, they are small firms with a few staff members and just enough funding from big pharma to carry out their work. If they get a hit drug, sure, they're hugely profitable, but right now all they have is smart doctors and an animal-tested theory.

You notice that all the emails we've had answered were from two of the top people in the company, the CEO and CMO? They don't employ enough people to have underlings field questions.

If and when they have a good UK trial, we'll get our US trial. Just hope I'm old enough to participate!
 
@Rube, @Marlene One word: money. @attheedgeofscience explained many pages ago that companies like Autifony are not big pharmaceuticals, they are small firms with a few staff members and just enough funding from big pharma to carry out their work. If they get a hit drug, sure, they're hugely profitable, but right now all they have is smart doctors and an animal-tested theory.

You notice that all the emails we've had answered were from two of the top people in the company, the CEO and CMO? They don't employ enough people to have underlings field questions.

If and when they have a good UK trial, we'll get our US trial. Just hope I'm old enough to participate!
In fairness, oftentimes most startup founders will field most questions about their company, since the potential users (us) are going to be the consumer of their creations and a lot of good CEOs will tell you its good to hear from your customers.

I don't think it should cast any negative feelings towards the situation. If it works, it works. Doesn't matter how many are involved, what matters is what they are doing and how well they know and execute the path to their goal.
 
@Marlene
@LondonGirl I'm not sure how long you had your T but if it's in the time frame they are seeking I would still apply and have the evaluation performed by them. Some people have posted responses from autifony and they clearly state that they will reevaluate their inclusion criteria if they are unable to select people with their current requirements. At the very least they can keep you on file for when they do actually expand the trials.
@Rube, I'm on other meds and they only want people who are 'clean' so no potential interaction! (that makes me sound like a drug addict - it is a prescription from my doctor :) )
 
It seems to me its very difficult to find people with moderate tinnitus who aren't on any meds and are 6-18 months. Like a person who is fairly new to clinically significant tinnitus is very likely to be taking some coping medication.
So far we have zero candidats from our forum.
 
How honest do you need to be with what you tell them about your drug usage?

Very honest, since drug use can skew up the results and ruin everything. It's very important that the patients are clean since they don't know how the drug will work if it is mixed with other medications.
 
How honest do you need to be with what you tell them about your drug usage?
i definitely wouldnt recommend lying to get into the study, but if you meet most of the inclusion criteria i would still let them evaluate me. if the dont select me thats fine but they may keep me on file in case they change the criteria or expand the program.
 
I don't think it should cast any negative feelings towards the situation. If it works, it works. Doesn't matter how many are involved, what matters is what they are doing and how well they know and execute the path to their goal.
Yeah, I was not trying to be negative at all, just point out that despite the $$ quoted as going to Autifony in grants, it's evidently not so much that they are able to move forward in every field they would like to, e.g. no US trial at this time. I've been really impressed by the response I and others have received, and it's made me confident that these doctors are doing what they can in a responsible and professional manner.

Oh, and about the psychoactive drugs, remember that the criteria is not a clean slate for the full term of your tinnitus, just a 30-day moratorium. So if you start tapering off meds now, it's taper time + 30 days until you'll be eligible. Seeing as how Dr Harris mentioned more info over the next 4-6 weeks, now's the time to start. I realize that's a lot to ask for some who struggle with sleep and getting through the day with this condition, but you've got to look forward to the potential benefit.
 
Yeah, I was not trying to be negative at all, just point out that despite the $$ quoted as going to Autifony in grants, it's evidently not so much that they are able to move forward in every field they would like to, e.g. no US trial at this time. I've been really impressed by the response I and others have received, and it's made me confident that these doctors are doing what they can in a responsible and professional manner.

Oh, and about the psychoactive drugs, remember that the criteria is not a clean slate for the full term of your tinnitus, just a 30-day moratorium. So if you start tapering off meds now, it's taper time + 30 days until you'll be eligible. Seeing as how Dr Harris mentioned more info over the next 4-6 weeks, now's the time to start. I realize that's a lot to ask for some who struggle with sleep and getting through the day with this condition, but you've got to look forward to the potential benefit.

They decided to try and save money by requiring that participants in the UK Tinnitus trial have some sort of measurable hearing loss. If they can show that hearing is improved as well, they might get more funding. Kind of like killing two birds with one stone. If they were concerned that they wouldn't have enough money to run both trials before they hit their next milestone payments, I'm sure that the people there chose the idea of continuing to operate and receive a paycheck over running two trials concurrently which could possibly bankrupt them.
 
Sorry if this is a dumb question. I want to register for the autifony trials in the UK. But will I see the link for the recruitment trials for autifony on their website or on the NHS website. I understand that they are going to start recruiting soon and I just wanted to know where to go to sign up. Will the link or trial recruitment be starting in the next few weeks or is it possible to register now with them for these trials.
Please if you can help me or send me the link as you are all much more knowledgeable than me with this....
many thanks

Hi amandine, this is a very good question. Not much info re criteria on their website. NHS so far have most of the criteria. There is a contact section on the Autifony page, and on the NHS page specific to the study. I would suggest emailing both, and finding out the locations.
Seems that they have not posted the locations yet. This seems a bit slow. So go ahead and send them an email. Chances are that will give you a heads up on registering.
 
Can anybody tell me how they can actually see that the rats have developed Tinnitus? Is that the same for us? Can you scan the brain and see that we have T? Would be easier to be taken serious.
They do this thing where they will expose them to like 116 db for an hour.. And then wait a week and then test them i think by playin a loud tone and then stopping it so they can tell if any of them react or dont act to the silence the ones that dont have a defiency in gap? Meaning they have tinnitus so they cant tell when its silent or when its not.... Thennnnn for autifony they gave them the pills and then noticed they all reacted to the silent gaps so assuming there T went away. I explained it pretty shitty but i think thats how it works.
 
They do this thing where they will expose them to like 116 db for an hour.. And then wait a week and then test them i think by playin a loud tone and then stopping it so they can tell if any of them react or dont act to the silence the ones that dont have a defiency in gap? Meaning they have tinnitus so they cant tell when its silent or when its not.... Thennnnn for autifony they gave them the pills and then noticed they all reacted to the silent gaps so assuming there T went away. I explained it pretty shitty but i think thats how it works.

Okay, so no scans or "brain reading".

hmm couldn't that also mean that they just lost hearing on that frequency? Do you always get tinnitus from hearing loss from trauma at the specific freq?
 
Sorry if this is a dumb question. I want to register for the autifony trials in the UK. But will I see the link for the recruitment trials for autifony on their website or on the NHS website. I understand that they are going to start recruiting soon and I just wanted to know where to go to sign up. Will the link or trial recruitment be starting in the next few weeks or is it possible to register now with them for these trials.
Please if you can help me or send me the link as you are all much more knowledgeable than me with this....
many thanks
As Lisa88 mentioned, you can email, but they'll likely just say they will be posting more in a few weeks. Just keep watching http://autifony.com/autifony-pipeline.asp and the pages it links. Hope you get in!
 
No, not everyone gets tinnitus.. Some just loose some hearing and thats it. Well everyone going through life experiences hearingloss through age and stuff but its probably barely noticeable until your about 60 some its younger but then theres some who loose a frequency and get stuck with T for life cause the neurons are just continously firing away and wont rest. Thats where we hope autifony calms the damn neurons down. Im guessing but i say most go through life with just hearingloss doesnt matter how much they expose themselves, And the rest unlucky ones like us get hearingloss, and T. Or no hearingloss and just T. Its stupid.
Okay, so no scans or "brain reading".

hmm couldn't that also mean that they just lost hearing on that frequency? Do you always get tinnitus from hearing loss from trauma at the specific freq?
 
I agree : ) When it's broken it should just stay broken, hehe. Weird feature of the brain/ear to keep the sounds firing instead of just losing the freq.

But this is also why I believe there will be a cure or treatment, because there is a reason for this, and we might be able to "alter the firing".
 
@Grace @Visitor1538

Regarding the mice. Werent there talk early in the thread about some type of scan that could see these overactive neurons and that's how they knew that the mice had T? I asked this question quite early in this thread bu I'm too lazy to look it up.
 
@Grace @Visitor1538

Regarding the mice. Werent there talk early in the thread about some type of scan that could see these overactive neurons and that's how they knew that the mice had T? I asked this question quite early in this thread bu I'm too lazy to look it up.
Ah I see : ) btw, how do you tag someone? just write @ in front? And do you know if the scan could be used on humans?
 
Ah I see : ) btw, how do you tag someone? just write @ in front? And do you know if the scan could be used on humans?

To tag someone you just put a @ in front of the persons name. No space between the @ and the name :)

I don't know really. I think that other people here knew more about how they could tell that the rats had T and how they can see these neurons being overactive. If you go back to page 8 of this thread, you'll see when I asked this question. Maybe you get some better answers there.
 
Wasnt it called a M.E.G scan? Or something like that, that they are gonn be able to use to tell now but i think its a pretty new thing using it on tinnitus patients.
@Grace @Visitor1538

Regarding the mice. Werent there talk early in the thread about some type of scan that could see these overactive neurons and that's how they knew that the mice had T? I asked this question quite early in this thread bu I'm too lazy to look it up.
 

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