Outpatient Tinnitus Clinic, Self-Help Web Platform, or Mobile Application to Recruit Patients?

Tinnitus Talk

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Jan 23, 2012
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About a year ago we asked all of you to complete a tinnitus survey we created.

A whopping 5,017 of you did, which, as far as we know, made it the largest online survey ever carried out on tinnitus to date.

Later on, an article about the survey was published in the American Tinnitus Association magazine Tinnitus Today.

We, and the community, also piqued researchers' interest. This followed in further analysis of the survey results as well as us being invited to research conferences.

Today, we're proud to announce the fruits of our labor.

As part of the Frontiers Research Topic "Towards an Understanding of Tinnitus Heterogeneity," a scientific article we were co-authors of, has now been published.

The title of the study is "Outpatient Tinnitus Clinic, Self-Help Web Platform, or Mobile Application to Recruit Tinnitus Study Samples?"

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Large sample sizes are required for understanding of tinnitus heterogeneity. It is investigated how these three different sets of samples differ and what the potential implications for clinical research are.

It may seem a modest achievement to some when the noises still persist in our ears and all of us want a cure or a treatment, but getting there is a process and one of the obstacles to tackle is further understanding of the heterogeneous nature of tinnitus and also the patient experiences.

It is therefore a great pleasure of ours to announce that in the near future we'll be launching a follow up survey investigating the physical links of tinnitus and also a project on tinnitus and exercise. Many people are able to modulate their tinnitus by different kinds of physical movements and activity, and we want to learn more about this.

There is a real change in the air. The research community are connecting more with patients and they want to know what matters to us as outcomes. We have an unprecedented opportunity to play a major role in ongoing research and understanding of tinnitus, on the road to the cure.
 
Finally some attention. Hopefully some day in my life time the nasty "learn to live with it" will be replaced with something effective.

Well done guys you are changing the history.
 
Finally, the medical and scientific communities get the value of patient input in research! It may not be a cure, but Tinnitus Talk indeed is making history. These are the same professionals who in the past were claiming online communities did nothing but spread misinformation and urged their patients to steer clear.

Congratulations and thanks to @Markku and @Steve. Your hard work and determination will make life better for all tinnitus sufferers.
 
Great work!!!!

Yes you can regulate your tinnitus with exercise, the key I found was to start slow, a gradual increase to your performance standards.

The noise level is intense at first but after several months you'll notice a dramatic reversal of your tinnitus noise levels. I go up to 4 or 5 days of very low tinnitus on a hard workout now.
 

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