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

[LondonGirl]

@rtwombly

yes i fit the criteria. perfectly. Just need somewhere to stay in uk and i can register and fitting the criteria will get into the trials.
Any offers? Does anyone have a house, apartment , room, anything to help out. Please.
It is not requred for long and anyhow I shall find my own permanant accomodation.
But I fit into this criteria for this trial - and can report back to this forum.
there is an offer to do this trial....on the table.....
I have discussed this with someone else and yes I am a perfect candidate for autifony....

@amandine, I'm afraid I only have a 1 bed flat but perhaps people on this forum could club together to raise funds for you to stay in the UK? I would be happy to contribute, after all you would be giving us great insight! Maybe the admin staff could facilitate a fundraising initiative?

 

[Markku]

I think @amandine has a good chance of finding someone who has space (and is willing) to host her in the UK but, as I've said previously, she needs to start a new thread about it in "Support". More eye balls will be reading it!

 

[DebInAustralia]

I will ring the UK tomorrow.

Which hospital and what quesons would like me to ask?

 

[tomm]

@tomm
hi
my shortest post!
yes
phone - number - old technology but still works well....lol
but they are not interested in talking tomm until the person has had t diagnosed for at least 6 months - you wont be 6 months tll april 15 and they finish recruiting in may 15.

by the way tomm how are you doing now ? any reduction in your T since the injections?

Thanks for confirming. I'm doing about the same. Time has made it a bit better - it's quieter than it was a month ago and my left ear feels less full.

I can't host you in London as I originally offered (plus Wigan is *miles away!*) - after my T my organisation kinda (totally) fell to bits - I'm on a very obliging friend's sofa at the moment myself! It's a shame you're not moving to UK permanently, we could have a really quiet T friendly house

 

[amandine]

@tomm

Good to hear that you are doing better.
Sorry to heat that you dont have your home but it is good that you have your friends hospitality at least.
yes i would be returning to the uk permanently. Is that a feasible idea? whereabouts area were you thinking?

 

[tomm]

@tomm

Good to hear that you are doing better.
Sorry to heat that you dont have your home but it is good that you have your friends hospitality at least.
yes i would be returning to the uk permanently. Is that a feasible idea? whereabouts area were you thinking?

Hah, I kind of expected you to laugh and brush the idea off. I'm working in central London at the moment about equidistant from London Bridge and Southwark. The tube is ragingly loud so I'm hoping to rent somewhere close enough to walk or cycle.

That's very different from the middle of the French countryside, although the place I'm at now does have the benefit of constant background traffic to take your mind off the quieter elements. It's not crashing waves a crashing river or constant rain but I'll take what I can get.

 

[Rube]

So......has anyone gotten on this trial?

 

[MattMSP]

I haven't had a chance to read through the whole thread but is this intended to be a cure or will it be a pilL that is necessary to continue taking for eternity?

 

[OddV]

@MattMSP I don't think that can be said right now. Based on the Retigibine thread, it might be a 2 month dosage and then you are cured. We won't know until after the trials.

 

[amandine]

@MattMSP

To be honest I dont think that anyone knows including Autifony. Maybe someone else can shed more light on this.
To be honest it has only be tested in phase 1 for efficacy and phase 2 is to see whether is safe AND effective in treatment. We were all hoping that it could be the trobalt that many are experimenting with here but without the side effects. Who knows....can someone else provide a more enlightened answer to this please?

 

[amandine]

@OddV

Hi how are you? I hope your ringing is better by now. Thank you for your PM. I shall reply to you soon.

 

[rtwombly]

@MattMSP it's a different drug and you get on a full dose immediately, unlike Retigabine which you have to get on gradually. A month may be all you need. Two weeks might even be enough. It will likely vary from person to person because the permanent cure happens due to your own brain's plasticity. But amandine is correct, even the doctors at Autifony don't know.

 

[lapidus]

To be honest it has only be tested in phase 1 for efficacy and phase 2 is to see whether is safe AND effective in treatment.

Sorry for being a besserwisser but phase 1 was only for safety, not efficacy. Phase 2 is for efficiacy (and further safety).

 

[OddV]

Have they published the findings from Phase 1?

 

[LondonGirl]

There are no findings - apart from it was safe on healthy (never suffered from tinnitus) human guinea pigs.

 

[DebInAustralia]

Is this trial for Uk residents only?

 

[Christian78]

Is this trial for Uk residents only?

only UK.... will last 6 months, and in those several groups, there is also conditions max 12 months t and some hearing demage

 

[DebInAustralia]

i fit their criteria but outside their geographical consideration!

 

[rtwombly]

i fit their criteria but outside their geographical consideration!

We should start a club!

 

[amandine]

To be honest it has only be tested in phase 1 for efficacy and phase 2 is to see whether is safe AND effective in treatment.
Sorry for being a besserwisser but phase 1 was only for safety, not efficacy. Phase 2 is for efficiacy (and further safety).

@lapidus

yes sorry this was of course what i meant but typed it a bit too quickly and didnt check what i wrote before posting
my fault

 

[beemovie]

Is anyone on here from the UK on that autifony trial?..... http://www.autifony.com/autifony-tinnitus-phase-IIa-trial.asp

 

[rtwombly]

Is anyone on here from the UK on that autifony trial?..... http://www.autifony.com/autifony-tinnitus-phase-IIa-trial.asp

That's the main topic of the thread now, beemovie. Trying to find people who qualify and get them in. I believe Freddie qualifies, but has not been able to get anyone on the phone, amandine qualifies but needs lodging in the UK since she now lives in France. Hearing loss requirements cut a lot of people on here out, but Autifony has said they don't think it'll hinder their recruitment. That's the gist so far.

 

[SteveToHeal]

I found out that someone starts the trial tomorrow. I asked the trial co-ordinator if they would let me know if the person's t went down over the next month. He said what he can do is ask the person on the trial, if they would not mind speaking to me. If he/she consents, I might get trialee inside info that i could share, if given their consent.

Re the hearing loss criteria - they are submitting an amendment in Feb to either:
1. Take it out completely or
2. Modify it

At this point no other additional info. Will keep you posted.

 

[Martin69]

I found out that someone starts the trial tomorrow. I asked the trial co-ordinator if they would let me know if the person's t went down over the next month. He said what he can do is ask the person on the trial, if they would not mind speaking to me. If he/she consents, I might get trialee inside info that i could share, if given their consent.

Re the hearing loss criteria - they are submitting an amendment in Feb to either:
1. Take it out completely or
2. Modify it

At this point no other additional info. Will keep you posted.

We only want to hear something positive.

 

[amandine]

@SteveToHeal

Well done!!

Would you also state what age is their T as well please.
Do you currently know that now? or do you have no further info than that you have posted.

They are considering removing or amending the hearing loss criteria in February 2015. But they are stopping the trials in May 2015. So are they considering introducing this as they are concerned that they will not have enough trialees by February. Just seems odd that they would consider introducing this right at the end of the trial period.

 

[amandine]

@Martin69

We only want to hear something positive.

No we dont!! We want to hear the truth!

 

[SteveToHeal]

@SteveToHeal

Well done!!

Would you also state what age is their T as well please.
Do you currently know that now? or do you have no further info than that you have posted.

They are considering removing or amending the hearing loss criteria in February 2015. But they are stopping the trials in May 2015. So are they considering introducing this as they are concerned that they will not have enough trialees by February. Just seems odd that they would consider introducing this right at the end of the trial period.

I don't know. It's a good point. My feeling is they will be full by Feb anyway.

All i asked was if the person starting tomorrow would be willing to give me feedback. At this point, I know nothing about the person other than they are starting tomorrow. Which is a good thing, otherwise patient confidentiality would be broken. So only if the person starting tomorrow consents to talk to me, will I hear anything.

Sorry, no other info at this point. I thought i was pushing it as is, asking even that.

 

[tomm]

Spoke to UCL again. They have not started at all and are still organising things. They expect to get going by Christmas.

Has anyone got in contact with Birmingham?

 

[valeri]

I found out that someone starts the trial tomorrow. I asked the trial co-ordinator if they would let me know if the person's t went down over the next month. He said what he can do is ask the person on the trial, if they would not mind speaking to me. If he/she consents, I might get trialee inside info that i could share, if given their consent.

We need an icon for hopeful or fingers crossed

 

[dan]

@SteveToHeal - way to show initiative!