Participate in Tinnitus Studies (EU Only)

[Hazel]

Tinnitus patients often ask what they can do to move research forward. One way you can help is by volunteering for ongoing studies. This is possible for instance through the EU funded TIN-ACT programme. (But only if you're based in the EU near one of their study centres).

TIN-ACT is a research consortium that Tinnitus Hub, the organisation behind this forum, is a partner in. The name stands for Tinnitus Assessment, Causes, Treatments. The programme consists of 15 PhD studies, focusing on three areas: finding ways to measure tinnitus, investigating the root causes of tinnitus, and testing new treatments. I've written about the programme previously in this blog post.

One of the things I like about TIN-ACT is how the homepage of their website describes tinnitus as a "potentially devastating condition" that can be "enormously debilitating." Also, the focus on discovering the mechanisms underlying tinnitus appeals to me, since I'm convinced that's what will ultimately lead to a cure. That said, it's early days yet and we have to see what comes of these studies.

But... one thing we know for sure: Without patients volunteering to participate in studies, research cannot move forward. So we would encourage you to consider it if you live nearby one of the TIN-ACT locations in Europe.

You can find more information on where and how to volunteer here.

 

[Simon Czt]

Done!

 

[Frédéric]

Done.

 

[Autumnly]

Done.

 

[Shahin Safazadeh]

It is absolutely great to have such a community as Tinnitus Talk.

Since we have our TIN-ACT researchers in the UK, Germany, France, Belgium, Denmark, and the Netherlands, volunteers are more than welcome to participate in these projects.

I would also suggest them to visit our website https://tinact.eu/ to read the recent activities of the TIN-ACT projects.

 

[Krolo]

Done!

 

[Krolo]

It is absolutely great to have such a community as Tinnitus Talk.

Since we have our TIN-ACT researchers in the UK, Germany, France, Belgium, Denmark, and the Netherlands, volunteers are more than welcome to participate in these projects.

I would also suggest them to visit our website https://tinact.eu/ to read the recent activities of the TIN-ACT projects.

You might also try to reach out to Sweden!

 

[EDDTEKK]

Done

 

[Gabriel]

That's great, I have been waiting exactly for someone to do that - collecting a lot of data on tinnitus to map it.

IMO this is what should be done at first, mapping it and understanding how tinnitus works in order to find a real solution. Seeing the big picture.

 

[Mathieulh]

I registered, sadly I doubt this will do anything or anyone will care.

 

[Hazel]

It is absolutely great to have such a community as Tinnitus Talk.

Since we have our TIN-ACT researchers in the UK, Germany, France, Belgium, Denmark, and the Netherlands, volunteers are more than welcome to participate in these projects.

I would also suggest them to visit our website https://tinact.eu/ to read the recent activities of the TIN-ACT projects.

Welcome to Tinnitus Talk, Shahin! It's really great to see researchers come here to interact directly with patients

 

[razo]

Done.

 

[Shahin Safazadeh]

Thanks to all the people who kindly filled in the participation form to cooperate with the TIN-ACT researches. I received many registrations just from this forum. It is so amazing...

Most of the enrolled subjects are from the countries where we (in TIN-ACT) have no researchers there, and also, for our researches we need subjects with specific criteria in tinnitus, hearing loss, hyperacusis, etc. So, that is why we decided to edit the registration form, make it more specific, to respect other people's time.

Of course, I am sure that there are many research teams working on tinnitus in different countries and also, new projects in this topic are being started. So, it is always possible to find such scientific groups and join them.

 

[Atlas Bound]

Tinnitus patients often ask what they can do to move research forward. One way you can help is by volunteering for ongoing studies. This is possible for instance through the EU funded TIN-ACT programme. (But only if you're based in the EU near one of their study centres).

TIN-ACT is a research consortium that Tinnitus Hub, the organisation behind this forum, is a partner in. The name stands for Tinnitus Assessment, Causes, Treatments. The programme consists of 15 PhD studies, focusing on three areas: finding ways to measure tinnitus, investigating the root causes of tinnitus, and testing new treatments. I've written about the programme previously in this blog post.

One of the things I like about TIN-ACT is how the homepage of their website describes tinnitus as a "potentially devastating condition" that can be "enormously debilitating." Also, the focus on discovering the mechanisms underlying tinnitus appeals to me, since I'm convinced that's what will ultimately lead to a cure. That said, it's early days yet and we have to see what comes of these studies.

But... one thing we know for sure: Without patients volunteering to participate in studies, research cannot move forward. So we would encourage you to consider it if you live nearby one of the TIN-ACT locations in Europe.

You can find more information on where and how to volunteer here.

Hey Hazel, could it be that the link is not working anymore? I get a 404-error by clicking on it... Would really like to sign up!

 

[Hazel]

Hey Hazel, could it be that the link is not working anymore? I get a 404-error by clicking on it... Would really like to sign up!

Hi there, see @Shahin Safazadeh 's message above, which explains why. They got a lot of people signing up who were not in the right location(s). If you think you are, please contact him directly!

 

[Shahin Safazadeh]

Hey Hazel, could it be that the link is not working anymore? I get a 404-error by clicking on it... Would really like to sign up!

I am very sorry to hear that. I hope this explanation helps:

There are 15 (human and animal) studies in our TIN-ACT project, and in each of them, there are some inclusion and exclusion criteria for the participants (e.g. hearing loss laterality, hearing loss level, tinnitus condition, and etc.).

Since many of the interested people who registered on the website already have the exclusion criteria, we thought it is more efficient to put the specifications in the registration form. This way only the volunteers with the inclusion criteria register.

 

[EDDTEKK]

Where can we find those studies showing the inclusion and exclusion criteria?

How to register? I have registered from the beginning but I don't know if I am eligible. Didn't receive any mail yet.

 

[Shahin Safazadeh]

Where can we find those studies showing the inclusion and exclusion criteria?

How to register? I have registered from the beginning but I don't know if I am eligible. Didn't receive any mail yet.

Thank you for your consideration.
Since there are several studies with different criteria, we are going to make a systematic form to let the volunteers know if they are eligible for a specific study, or not. Although, this form is not designed yet.
In our next workshop (in 2 weeks), we will design such a form and I will update the website as soon as possible.

For your registration, I should say that I am very sorry that you did not receive any reply. In fact, I received many registrations with different tinnitus conditions. It was not possible to reply them one by one since I had to write a specific answer for each of them. So, I decided to explain the situation here and I know that almost all of them are a member of this forum. I hope everyone reads this post.

 

[Atlas Bound]

I am very sorry to hear that. I hope this explanation helps:

There are 15 (human and animal) studies in our TIN-ACT project, and in each of them, there are some inclusion and exclusion criteria for the participants (e.g. hearing loss laterality, hearing loss level, tinnitus condition, and etc.).

Since many of the interested people who registered on the website already have the exclusion criteria, we thought it is more efficient to put the specifications in the registration form. This way only the volunteers with the inclusion criteria register.

Hi Shahin, thank you so much for the quick reply! I might be wrong, but wouldn't that still mean I'm able to register to TIN-ACT? As of now, I just can't seem to find a web page where I can sign up!

And in reply to Hazel: I'm situated in the Netherlands, so could it be a web development issue?

I'd love to hear from you.

 

[Shahin Safazadeh]

Hi Shahin, thank you so much for the quick reply! I might be wrong, but wouldn't that still mean I'm able to register to TIN-ACT? As of now, I just can't seem to find a web page where I can sign up!

And in reply to Hazel: I'm situated in the Netherlands, so could it be a web development issue?

I'd love to hear from you.

Hi,

Well, you're right. You will be able to register to TIN-ACT, but not now. After we change the registration form and update the link, I will let you know (here) that the link is ready.

I really appreciate your motivation.

 

[Frédéric]

Hi,

Well, you're right. You will be able to register to TIN-ACT, but not now. After we change the registration form and update the link, I will let you know (here) that the link is ready.

I really appreciate your motivation.

Any update please? Impossible to login and no link to create a (new) account.

 

[Frédéric]

Just to inform you that I will participate in a clinical trial on Wednesday morning, February 19th.

Research Project 14, Marseille, France
Developing customized acoustic stimulation to improve tinnitus
with Elza Daoud

See link: https://tinact.eu/recruitment/ n°14

 

[Frédéric]

So I went to my appointment yesterday, I go back to it tomorrow. I "signed" (verbally) an NDA so I will not be allowed to tell you more than Arnaud Norena (who leads this clinical trial) told in his interview: https://www.tinnitustalk.com/thread...-tri-2019-conference.34029/page-4#post-505013

Very important thing: The PhD student who gave me the tests told me that she obtained the list of the patients of IMERTA, the tinnitus clinic based in Marseille, without any problem. The problem is that when she called patients to warn them about her clinical trial, almost everyone told her that they were not interested taking part in it though they have severe tinnitus and live close to the clinical trial site.

That corroborates the apathy of the tinnitus sufferers for the BTA petition and enlights a paradox: people suffer but they are not keen on pushing their efforts to get a cure.

 

[Joeseph Stope]

So I went to my appointment yesterday, I go back to it tomorrow. I "signed" (verbally) an NDA so I will not be allowed to tell you more than Arnaud Norena (who leads this clinical trial) told in his interview: https://www.tinnitustalk.com/thread...-tri-2019-conference.34029/page-4#post-505013

Very important thing: The PhD student who gave me the tests told me that she obtained the list of the patients of IMERTA, the tinnitus clinic based in Marseille, without any problem. The problem is that when she called patients to warn them about her clinical trial, almost everyone told her that they were not interested taking part in it though they have severe tinnitus and live close to the clinical trial site.

That corroborates the apathy of the tinnitus sufferers for the BTA petition and enlights a paradox: people suffer but they are not keen on pushing their efforts to get a cure.

The onset of tinnitus puts you in a panic where you run around after any and every therapy going. After three, four, five, whatever amount of therapies you get a bit tired (and broke) and you kind of slow down and take things more carefully and conservatively. The distinction must be made between acute and chronic cases.

Well that's my explanation. I'm sure there are loads of sufferers who are depressed and yes, apathetic / lethargic about going through some more experimentation. We gotta motivate them somehow.

 

[Frédéric]

We gotta motivate them somehow

You gave me an idea: I shared this information (TIN-ACT clinical study in Marseille) to French Facebook tinnitus groups. Thanks.

 

[Joly]

Is it still possible to register?

 

[El BUZZ]

Just to inform you that I will participate in a clinical trial on Wednesday morning, February 19th.

Research Project 14, Marseille, France
Developing customized acoustic stimulation to improve tinnitus
with Elza Daoud

See link: https://tinact.eu/recruitment/ n°14

That sounds very similar to a trial that has taken place here in Spain, just in Madrid. They installed an app on your Android phone and you had to listen to a tailored-to-your-tinnitus sound for half an hour every day. I haven't participated myself but a friend of mine did and says it helped a bit.