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

#841
@2131e - The official position is that the placebo group do not get the opportunity to try the real drug (even after the trial is over). I think that is what is stated in the Participant Info Sheet and it is possible that the person you spoke to was just quoting the info from the sheet. In practice, if the people taking the actual drug report positive effects, then it might be considered inhumane to withhold the drug from the placebo group. (The doctor at Salford seemed to agree with me about that.) However, the decision would be at Autifony's discretion and would probably not be left to the trial doctor - they would want to adopt a consistent policy across all participating hospitals. So I wasn't given a clear answer to this question and you shouldn't read too much into what I've said.

@Manuel Tissm - The trial doctor will not necessarily know how long the drug will take to reach the market (if it ever does) but it is a good question and I will ask the doctor next time I get the chance.
 
#842
Hi guys, well I have passed the telephone questionnaire. The only hiccup is that I haven't had T long enough so I am to ring them back in May and then they will do the screening for the trial.
So that is where I'm at with things at the mo.
 
#843
Hello Gill, I did that telephone questionnaire as well and passed and as I have had mine for about 13 months I do fit into their criteria so at the moment I am waiting to be contacted with an appointment for the screening trial, this is at the UCL in London.

They e mailed me last week to say I should be contacted soon and will have a letter sent out to me so I will give it a couple of more days then I will chase, so fingers crossed it all goes ok and I can get onto the trial, I will let you know how it goes.

All the best
 
#846
Good luck everyone!
The more members we have on the trial the better chance of someone actually getting the real drug. Exciting times for sure, let's all hope that there are positive results with this drug!
Please continue to update us :)
 
#848
Gill Hayes said:
Hi guys, well I have passed the telephone questionnaire. The only hiccup is that I haven't had T long enough so I am to ring them back in May and then they will do the screening for the trial.
So that is where I'm at with things at the mo.
Click to expand...
When are the trials finishing then Gill? Thought that by May it would be too late ie still going but only for a month or so and therefore at an end and full up too.
Maybe they told you more and it is not finishing so soon?
 
#849
A TT member, Asian, asked BTA the timescale before a treatment for tinnitus will become available. Nic from BTA responded as follows and quoted the Autifony drug:

I think 5 years is probably too soon - trials take an awfully long time. I've been working for the BTA for nearly 5 years, and I know it was in my early days here that the Autifony compound was mentioned, which is only now recruiting for Phase IIa trials. And let's not forget the whole approval and certification process ... and then, at least in the UK, that all treatments have to be considered by NICE
 
#855
2131e said:
The London trial have had 3 people before me, some of whom have gone in for initial screen appointments. So, presumably people will be starting soon
Click to expand...

@2131e
Have you had any success initiating the enrollment onto the trial?

Also, how's your wombat doing?
 
#858
@Hudson and @Mark662

Wombat's doing well, thanks for asking :)

A referral has been sent for me to the study coordinator, and they are going to email me with an appointment time. At this stage I think that if I'm eligible I'll do the trial, so long as I am able to successfully do frequency matching at the first appointment. At the moment my T isn't bothering me that much and for the life of me I can't work out if this is 'habituation' or if it is lessening. But it is still there of course - I'm just not suicidal about it anymore. I thought about not doing it on the grounds that I'm keeping someone else out who might need this treatment more - but then I thought, well, we don't know yet if it works, and at least I'd be able to report back on what happened, if my hearing is bad enough that I'm deemed eligible
 
#859
I signed up for the trial, and I am now on my second day of taking the pills. Will check in to forum and give reports on how I am progressing. My tinnitus loudness level has always varied from day to day. Day one which was last night it spiked but then I was mega tired, out of 10 I would give it an 8. Today since midday it as been a 3 and I have no side effects to report.
 
#860
chamferman said:
I signed up for the trial, and I am now on my second day of taking the pills. Will check in to forum and give reports on how I am progressing. My tinnitus loudness level has always varied from day to day. Day one which was last night it spiked but then I was mega tired, out of 10 I would give it an 8. Today since midday it as been a 3 and I have no side effects to report.
Click to expand...

Congratulations for having the chance to access to this trial!!!
You say your T varies widely. Is there before the treatment?
Can you tell us the dosage of taking the tablets? At what times of the day? On an empty stomach?
Finally, can you tell us specify as the origin of your tinnitus and sound frequency?
I hope you do not have a placebo and that you will hold us know!
Thank you for your answers and i am crossing every fingers for you!!

@Markku: Is it possible to open a specific tread for forum members following the AUT00063 treatment? This tread may have the same format as for Trobalt. https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047

As a new member, I noticed that the treads quickly become very long and it becomes very difficult to identify the information impressions of people receiving treatment.

What do you think about it @Markku?

https://www.tinnitustalk.com/members/markku.1/
 
#861
chamferman said:
I signed up for the trial, and I am now on my second day of taking the pills. Will check in to forum and give reports on how I am progressing. My tinnitus loudness level has always varied from day to day. Day one which was last night it spiked but then I was mega tired, out of 10 I would give it an 8. Today since midday it as been a 3 and I have no side effects to report.
Click to expand...
2nd day and still nothting? Sounds like placebo to me.
See this is I think Autifony's mistake to recruit people with highly variable tinnitus because its hard to say if its the med or just the tinnitus doing its thing.
 
#862
NGC891 said:
Congratulations for having the chance to access to this trial!!!
You say your T varies widely. Is there before the treatment?
Can you tell us the dosage of taking the tablets? At what times of the day? On an empty stomach?
Finally, can you tell us specify as the origin of your tinnitus and sound frequency?
I hope you do not have a placebo and that you will hold us know!
Thank you for your answers and i am crossing every fingers for you!!
Click to expand...

Q.You say your T varies widely. Is there before the treatment? A.Yes T loudness level varied before treatment
Q.Can you tell us the dosage of taking the tablets? At what times of the day? On an empty stomach? A. 4 x 200mg tablets not on empty stomach, has to be same time every day
Q.Finally, can you tell us specify as the origin of your tinnitus and sound frequency? A. My T started from a condition called Bells Palsy, but my doctor thinks it could have happened at any time. I am inclined to agree as over the years I have exposed my self to loud noise thorough work and play,sound frequency is around 6kHz.
 
#863
@chamferman

On your profile it says that you have had T since June 2013. Is there not a time limit to enter these trials and wasn't this from 6 to 18 months? If your T started in June 13 then you would be in your 19th to 20th month now depending when in June 13 it started. Are they then not strict with these time limits or have I got it completely wrong or is June 13 a typo maybe?
Thanks for clarifying
 
#864
amandine said:
@chamferman

On your profile it says that you have had T since June 2013. Is there not a time limit to enter these trials and wasn't this from 6 to 18 months? If your T started in June 13 then you would be in your 19th to 20th month now depending when in June 13 it started. Are they then not strict with these time limits or have I got it completely wrong or is June 13 a typo maybe?
Thanks for clarifying
Click to expand...
Well spotted it was indeed a typo, End of July was my official T start date, I blame it on my sausage fingers :LOL:
 
#865
chamferman said:
Well spotted it was indeed a typo, End of July was my official T start date, I blame it on my sausage fingers :LOL:
Click to expand...
Excellent thanks for checking In and updating us.
Do you have H also? Any changes with H if you have it?
Did they give you the full months dosage to take home with you?
Did you feel anything at all so far?
 
#866
dan said:
2nd day and still nothting? Sounds like placebo to me.
See this is I think Autifony's mistake to recruit people with highly variable tinnitus because its hard to say if its the med or just the tinnitus doing its thing.
Click to expand...
I would say wait a bit longer than 2 days to declare it is a placebo.
 
#867
Rube said:
Excellent thanks for checking In and updating us.
Do you have H also? Any changes with H if you have it?
Did they give you the full months dosage to take home with you?
Did you feel anything at all so far?
Click to expand...

Hi Rube
I had H for the first 6 months of T and thankfully it went, they gave me the full dosage, I don't want too say I am feeling the effects of the drugs until I am really sure that I am, if that makes sense.
 
#869
chamferman said:
Hi Rube
I had H for the first 6 months of T and thankfully it went, they gave me the full dosage, I don't want too say I am feeling the effects of the drugs until I am really sure that I am, if that makes sense.
Click to expand...
Understood, I'm hoping you find some relief. Thanks for the reply!
Any chance you can post a pic of the tablet ? Not sure if that's ok or not....mods? @Markku @Steve
 
#870
Rube said:
Any chance you can post a pic of the tablet ? Not sure if that's ok or not....mods? @Markku @Steve
Click to expand...
That's fine. If there are enough volunteers for the trial, TT will also provide a free space for updates.
 

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