Tinnitus Heterogeneity — Our Small Contribution to Defining Subtypes

Dear all,

As some of you know, Tinnitus Hub (the managing entity of this forum) is actively involved in tinnitus research. Our main contribution to research is gathering patient data through surveys. We have conducted several major surveys by now, all of which got several thousands of responses. We’ve shared this data freely with academics in the hope that we, as a patient community, can play a small role in furthering research and ultimately getting to a cure (or cures).

Today is a happy day for us because an article was just published based on one of our surveys. You can find the full text article below, with @Markku and @Steve named as co-authors.

Toward Personalized Tinnitus Treatment: An Exploratory Study Based on Internet Crowdsensing

The article delves into the topic of tinnitus heterogeneity. It’s one of the thorniest obstacles to finding a cure, i.e. the fact that tinnitus patients differ so much from each other; for instance in terms of what caused their tinnitus and what other conditions they suffer from. Much more needs to be understood about these variations and how they influence people’s responses to various treatments.

This article takes a step towards that understanding. 13 demographic and clinical ‘predictors’ were identified, which were hypothesized to affect treatment outcomes. It’s no golden goose, because the model ultimately only explains 16% of the variance in treatment outcomes. But certainly a step in the right direction.

The article was based on a survey we conducted back in 2016. Over 5,000 people responded. They were asked about the causes of their tinnitus, other conditions (pre- and post-tinnitus), what treatments they tried and how successful these were. More about the survey here.

We’d love to hear your thoughts on this article. We’ve been talking with Jorge Simoes and Patrick Neff (the main authors of the article) about doing a follow-up survey. They’re set on gathering big data; even much bigger than we’ve done with the 2016 survey. Ideas are very welcome.

 

Check out the blog post that Jorge wrote for us about his work!