UNITI — Unification of Treatments and Interventions for Tinnitus Patients

Discussion in 'Research News' started by Hazel, Jan 17, 2020.

    1. Hazel

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      the Netherlands
      Tinnitus Since:
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      I’m in Athens, Greece, right now, having just attended a 3-day kick-off meeting of a new tinnitus research consortium called UNITI. It’s another EU-funded tinnitus program, just like TINNET, ESIT, and TIN-ACT – all of which we were/are formal partners of.


      Having seen various such tinnitus research consortiums in action, with varying degrees of success, I came to this meeting with a certain healthy skepticism. Is this really something new or different? It might be, but I'll let you be the judge of that.

      UNITI’s Goals – Predicting Treatment Outcomes

      The aim of UNITI is to develop a model that can accurately predict which treatments or combination of treatments will work for which patients.

      Screenshot 2020-01-17 at 18.49.39.png

      We all know that hearing aids, for instance, have for some people completely resolved their tinnitus while others experience no benefit at all. Wouldn’t it be great if you could know ahead of time whether you fall in the former or latter group? And CBT, as we all know, is not for everyone. It could be though that for some people it only works in combination with another treatment like sound therapy.

      I can already hear you thinking: “CBT, hearing aids, sound therapy? There’s nothing new about that!” And that was my initial response as well. UNITI will only evaluate the effectiveness of existing, tested and widely available treatments. The novelty of it lies in the aim to find out what works for whom. What types of patients (based on certain biomarkers for instance) are susceptible to what types of treatments or combinations of treatments? This also ties into the quest for those (so far quite elusive) tinnitus sub-types – and without the sub-types, no cures. Still, I have wondered why newer/emerging treatments were not included and will try to get more info on that.

      So What’s New?

      Nonetheless, I believe there’s something really innovative going on here with the focus on collecting biomarker data from tinnitus patients. There’s some promising preliminary work on genetic markers for tinnitus – see for instance the work of Christopher Cederroth – and UNITI could really take this to the next level. They will be collecting biomarker and questionnaire data from about 500 patients. They will also be pooling existing datasets from different research centers into one big database. And more data is always better, in my opinion.

      Screenshot 2020-01-17 at 18.50.29.png

      Another innovative aspect is the use of computational modelling to predict treatment outcomes. This has not been done before, and if it works, it could be extended to any emerging or future tinnitus treatment to get a complete picture of what is effective for whom.

      What Can We Expect From UNITI?

      Can we realistically expect significantly better treatments due to this program? It’s a bit like predicting the lottery, to be honest. If it all goes very well, they might find something really beneficial for a certain group of patients. But a magic bullet likely not.

      Still… the implications could be broader than that. One of the reasons pharma companies for instance haven’t much picked up on tinnitus treatments is the lack of objective biomarkers and unclarity on sub-types, which will hopefully be (partially) addressed by UNITI. Plus, if really strong patterns are found in the data, i.e. if we know that people with a certain genetic, neurological or other biological predilection are more susceptible to a certain treatment, wouldn’t this provide a clear target for better (pharmacological) treatments or even cures?

      I know, it’s a long and winding road, the progress of science. I’m sure you each have your own opinions, questions or concerns on this program. Please post them here and I can guarantee that your messages will be seen and responded to by someone from UNITI!

      Our Role in UNITI

      Just to clarify my role in UNITI: I’m a member of their advisory board. That means I cannot directly influence how the research is carried out, but I can give input and advice. My aim is to involve as many of you in this as possible in the coming years. The project will run until the end of 2023, but this year is especially important because it lays the groundwork for everything else. So, if you have ideas on what types of data should be collected, how treatment outcomes should be measured, or anything else, let me know!

      Screenshot 2020-01-17 at 21.51.32.png

      Get Involved – Clinical Trial Protocol Review

      One concrete element of the project that we – as a patient community – have been invited to comment on is the clinical trial protocol, which is being designed as we speak. I therefore want to put together a small panel of people from our end to review and give feedback on the draft protocol. If you wish to volunteer for this, please PM me and Markku. In case of many applicants, we will favour those with a science background, but all should feel free to volunteer!
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    2. Nonomat

      Nonomat Member Benefactor

      Tinnitus Since:
      06/2019 (mild) - 11/2019 (intrusive)
      Cause of Tinnitus:
      Noise induced
      This is not directly linked to UNITI and as I understand it, has more to do with TINNET but as the research world of tinnitus is rather small, you kind of find the same people in both and I thought I could share this paper here:

      Tinnitus healthcare: a survey revealing extensive variation in opinion and practices across Europe

      Tinnitus remains a scientific and clinical problem whereby, in spite of increasing knowledge on effective treatment and management for tinnitus, very little impact on clinical practice has been observed. There is evidence that prolonged, obscure and indirect referral trajectories persist in usual tinnitus care.​

      It is widely acknowledged that efforts to change professional practice are more successful if barriers are identified and implementation activities are systematically tailored to the specific determinants of practice. The aim of this study was to administer a health service evaluation survey to scope current practice and knowledge of standards in tinnitus care across Europe. The purpose of this survey was to specifically inform the development process of a European clinical guideline that would be implementable in all European countries.
      Data collected from 625 respondents revealed significant differences in national healthcare structures, use of tinnitus definitions, opinions on characteristics of patients with tinnitus, assessment procedures and particularly in available treatment options. Differences between northern and eastern European countries were most notable.​

      Most European countries do not have national clinical guidelines for the management of tinnitus. Reflective of this, clinical practices in tinnitus healthcare vary dramatically across countries. This equates to inequities of care for people with tinnitus across Europe and an opportunity to introduce standards in the form of a European clinical guideline. This survey has highlighted important barriers and facilitators to the implementation of such a guideline.​

      So yeah, as you would have guessed, tinnitus "healthcare" is all over the place. But at least it is acknowledged in this paper. I do find that the answers of the practitioners differ from my own experience with the condition. Of course the people that answered the survey were more likely to know about tinnitus and offer better "care" than what we all have gotten so far. And this:

      "Finally, regarding the satisfaction rate on the service provided by their healthcare unit, 81.7% respondents from the north, 38.5% from the south and 35.0% from the east reported they were satisfied. In northern Europe, professionals were largely satisfied, whereas in southern and eastern Europe, opinions were more divided, and less than half of respondents claimed to be satisfied."
      Yikes, the north patient that I am would like to disagree on that :ROFL:

      Still, this is again a tiny step in the right direction. This at least shows that the people involved with UNITI are more than aware of the task at hand if you were doubting it :)
      • Informative Informative x 1
    3. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Marseille, France
      Tinnitus Since:
      Cause of Tinnitus:
      acoustic trauma
      I feel a bit stupid for posting the debate:
      without really understanding the concept of UNITI and without knowing about the existence of UK biobank.

      So about UNITI:
      I would say that, if I understand correctly:
      - this consortium is in the process of implementing what we wish for: recovering data / databases from tinnitus clinics /medical centers to create a large tinnitus database*.
      - so far, five clinical centres including Andalusian Health Service, KU Leuven Belgium, University of Regensburg, Charité Berlin and maybe Karolinska Institut Sweden, accepted to share their data / databases.

      If it is the case, I just have one big favour to ask to UNITI:
      Could it get in touch with the AFREPA in France (which means the French-speaking association of multidisciplinary teams in tinnitus), bringing together several tinnitus clinics, and ask them to share their databases?
      https://www.afrepa.org/-les-equipes-.html (see the map of the tinnitus clinics in France.)

      As I related in the debate thread, I am a patient of IMERTA in Marseille, which is a tinnitus clinic, member of AFREPA. I did a battery of tests in IMERTA and I would like this clinic center to share my medical folder to UNITI.

      Just out of curiosity, to go back to UNITI, I guess its computational model is related to this study

      *question: Will it in turn agree to give any researcher access to its database?
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    4. Badger19

      Badger19 Member

      Tinnitus Since:
      Cause of Tinnitus:
      Keep up the good work!

      A question, a bit off-topic unfortunately:

      I assume you're travelling a lot. Do you have any issues taking a plane?
    5. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Marseille, France
      Tinnitus Since:
      Cause of Tinnitus:
      acoustic trauma
      • Informative Informative x 1
    6. Piney

      Piney Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Shingles virus
    7. EDDTEKK

      EDDTEKK Member

      Tinnitus Since:
      Cause of Tinnitus:
      Acoustic Trauma
      Sorry to say, this consortium will bring nothing. We need treatments, not data. It’s sad that a bunch of researchers can’t fix tinnitus in the 21st century. They still don’t understand tinnitus.
    8. GBB

      GBB Member Hall of Fame

      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      They are testing bullshit treatments though.
    9. Piney

      Piney Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Shingles virus
      If you visit an ENT or Otolaryngologist and you say you went somewhat deaf along with getting tinnitus, then your audiogram shows ranges where others were helped with a hearing aid tuned at certain parameters, it might provide relief. Or at least provide some relief to avoid weeks of visits to see what will assist someone best.

      Regarding treatments - I’ll let you know when I can find a trial that the inclusion/exclusion criteria doesn’t restrict my enrollment.
    10. Tezcatlipoca
      Question it

      Tezcatlipoca Member

      Sorry but your comment is very ignorant. How is a treatment going to materialize without data?
      • Agree Agree x 4

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