Participate in Tinnitus Studies (EU Only)

Discussion in 'Research News' started by Hazel, Sep 7, 2019.

    1. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      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.
       
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    2. Simon Czt

      Simon Czt Member

      Location:
      France
      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Acoustic trauma
      Done! :)
       
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    3. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      Done.
       
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    4. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Done. :)
       
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    5. Shahin Safazadeh

      Shahin Safazadeh Member

      Location:
      Groningen - The Netherlands
      Tinnitus Since:
      No tinnitus
      Cause of Tinnitus:
      No tinnitus
      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.
       
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    6. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      Done!
       
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    7. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      You might also try to reach out to Sweden!
       
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    8. EDDTEKK

      EDDTEKK Member

      Location:
      Belgium
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Infection
      Done ✅
       
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    9. Gabriel
      Balanced

      Gabriel Member

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      I focused on verifying if I had tinnitus
      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.
       
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    10. Mathieulh
      No Mood

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      I registered, sadly I doubt this will do anything or anyone will care.
       
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    11. AUTHOR
      AUTHOR
      Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Welcome to Tinnitus Talk, Shahin! It's really great to see researchers come here to interact directly with patients :)
       
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    12. razo

      razo Member Podcast Patron Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Audio exposure
      Done.
       
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    13. Shahin Safazadeh

      Shahin Safazadeh Member

      Location:
      Groningen - The Netherlands
      Tinnitus Since:
      No tinnitus
      Cause of Tinnitus:
      No tinnitus
      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.
       
    14. Atlas Bound
      Peeping tom

      Atlas Bound Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      05/2017
      Cause of Tinnitus:
      Noise induced
      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! ;)
       
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    15. AUTHOR
      AUTHOR
      Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      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!
       
    16. Shahin Safazadeh

      Shahin Safazadeh Member

      Location:
      Groningen - The Netherlands
      Tinnitus Since:
      No tinnitus
      Cause of Tinnitus:
      No tinnitus
      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.
       
    17. EDDTEKK

      EDDTEKK Member

      Location:
      Belgium
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Infection
      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.
       
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    18. Shahin Safazadeh

      Shahin Safazadeh Member

      Location:
      Groningen - The Netherlands
      Tinnitus Since:
      No tinnitus
      Cause of Tinnitus:
      No tinnitus
      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.
       
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    19. Atlas Bound
      Peeping tom

      Atlas Bound Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      05/2017
      Cause of Tinnitus:
      Noise induced
      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.
       
    20. Shahin Safazadeh

      Shahin Safazadeh Member

      Location:
      Groningen - The Netherlands
      Tinnitus Since:
      No tinnitus
      Cause of Tinnitus:
      No tinnitus
      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.
       
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    21. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      Any update please? Impossible to login and no link to create a (new) account.
       
    22. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      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
       
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    23. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      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.
       
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    24. Joeseph Stope

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      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.
       
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    25. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      You gave me an idea: I shared this information (TIN-ACT clinical study in Marseille) to French Facebook tinnitus groups. Thanks.
       
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    26. Joly

      Joly Member

      Tinnitus Since:
      22/08/2019
      Cause of Tinnitus:
      Traumatisme sonore
      Is it still possible to register?
       
    27. El BUZZ
      Buzzed

      El BUZZ Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Loud music consumption plus acoustic trauma.
      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.
       

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