By Hazel Goedhart
This was my second time at a TIN-ACT meeting. [Well, really the third time, but I missed most of the last meeting in Berlin because my mom fell sick.] It was nice meeting the PhD students, their supervisors and the TIN-ACT managers again, this time in the UK at the Hearing Sciences section of Nottingham University.
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The one thing that people struggling with tinnitus mostly search for is a cure. Or if not a cure, then at least a treatment that will alleviate their tinnitus somewhat. Countless hours are often spent by desperate tinnitus patients Googling, reading articles, and asking their peers in online support groups for treatment advice.
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I already shared with you my general impressions of the tinnitus research field in our previous blog post. We had promised to follow up with a bit more detail on what actually went on at the Tinnitus Research Initiative (TRI) 2019 conference in Taipei, so here we go!
Since I spent most of my time conducting video interviews (they are coming soon, I promise!), I could hardly attend any of the talks. Here at Tinnitus Hub we’re all volunteers (who suffer from tinnitus ourselves) and we operate on a negligible budget. This meant I was alone at the conference, running around and trying to do a hundred things at once. It still stresses me out just thinking about it, haha.
And there were so many talks! The program entailed six keynote speeches, and 20 symposia – each of the latter including up to five different speakers.
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Are you curious about what’s really going on in the world of tinnitus research? Here at Tinnitus Hub it’s part of our mission to keep you informed. We’re kicking off a big project this year, publishing a series of short video interviews with tinnitus researchers. But I’m getting ahead of myself… First, let me tell you a little bit about the Tinnitus Research Initiative (TRI) annual conference that I recently attended.
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Many tinnitus patients are upset about the lack of research to seek a tinnitus cure. And many patients want to push for improvement but are unsure how to go about it. All too often, we end up doing nothing more than lamenting to each other about how bad the situation is. Therefore, we at Tinnitus Hub are highly excited to make this announcement, which demonstrates that patient engagement can make a difference!
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By Hazel Goedhart
This week, I attended a TIN-ACT workshop in Erlangen, Germany. It’s really exciting for Tinnitus Hub, as a patient organization, to be part of this research program that focusses exclusively on tinnitus!
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Sebastian Spering Kresge, best known as the founder of the Kmart department store chain. What is less known about this remarkable man is that he contributed greatly to the science of hearing. Founded in 1924, the Kresge foundation has funded the establishment of not one but two hearing research laboratories and one institute.
The COMiT’ID study aims to improve the quality of future clinical research by identifying a minimum standard for assessing how a tinnitus treatment has worked. COMiT’ID has involved the global tinnitus community with over 600 people taking part from over 40 countries. Thank you for all your support!
Here we share with you the main findings of our study.
Three separate online consensus surveys have now been completed to identify how sound-, psychology- and drug-based tinnitus treatments should be commonly assessed before and after treatment. A wide range of people took part based on their experience with one or more of these treatment types. These included people with lived experience of tinnitus, healthcare professionals, researchers, industry experts and funders of tinnitus research.
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We’ve all filled out surveys before, plenty of them probably. The thing is what do we usually gain from them? We rarely get to see the results or feel like what we did really made a difference.
Our first survey isn’t going to disappear, full results are being published on Tinnitus Talk for all to view and it’s a first step into a larger project to learn more about our tinnitus and what we can do about it.
When we analyse the treatment data we’re hoping that we can give you some real insight, things that may help you to think about what treatments may help you. We’ve got over 5,000 responses, giving us a really big pool of people that can tell us what has worked and what hasn’t.
By Hazel Goedhart This was my second time at a TIN-ACT meeting. [Well, really the third time, but I missed most of the last …
The one thing that people struggling with tinnitus mostly search for is a cure. Or if not a cure, then at least a treatment …
I already shared with you my general impressions of the tinnitus research field in our previous blog post. We had promised …
Work with us and tap into the power of the patient population.
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