UNITI — Unification of Treatments and Interventions for Tinnitus Patients

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

Abstract

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.​

Objective

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.
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Results

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.​

Conclusions

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."
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Yikes, the north patient that I am would like to disagree on that

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

 

I feel a bit stupid for posting the debate:
https://www.tinnitustalk.com/threads/biobank-for-tinnitus-—-debate.39588/
without really understanding the concept of UNITI and without knowing about the existence of UK biobank.

So about UNITI:
https://uniti.tinnitusresearch.net/index.php
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/
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
https://www.tinnitustalk.com/thread...ons-psychological-multimodal-therapies.39379/

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

 

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?

 

News about UNITI:

[SIZE]Unification of treatments and interventions for tinnitus patients (UNITI): a study protocol for a multi-center randomized clinical trial[/SIZE]

 

This is huge. When asking my VA audiologist who else came in before me with my similar situation, and what will help, I got a blank stare. This will help people.

 

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.

 

They are testing bullshit treatments though.

 

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.

 

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