Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

Yes! Easy peasy!
Did you submitted your answers, Jay?

 

The last thing I want to do is overwhelm people with more information but I added this to question 2 in my personal response, in the interest of transparency.

1. There is far too little consideration of the tinnitus population for admission into clinical trials. Companies often look for far too stringent of criteria to allow access into clinical trials. Tinnitus is almost unanimously considered a symptom of hearing loss and should be treated primarily as such.

2. Diagnostically speaking, the current "national standard" for detecting hearing loss (250 Hz-8 kHz audiometric testing) is archaic and unacceptable. Patients presenting with sudden onset tinnitus should be treated primarily as sudden-sensorineural-hearing-loss (SSNHL) patients and should be administered extended pure-tone audiometric testing (up to 20 kHz, with additional analysis paid to hearing symmetry, especially in respect to unilateral hearing-loss/tinnitus cases) to test for outer hair cell damage/loss, in addition to being tested for potential cochlear synaptopathy, which chiefly manifests as difficulty perceiving speech in the presence of background noise (speech-in-noise testing). Patients failing testing that are in the acute window (<1 month since onset) should be afforded steroidal treatments (high dose oral prednisone and/or intratympanic dexamethasone) to best ensure hearing recovery. SSNHL needs to be better recognized as the medical emergency that it truly is.

3. I would also like to see better conducted research on the treatment of acute (<1 month) tinnitus/SSNHL with the steroidal treatments listed above. This research would be incredibly easy to conduct with how prevalent both conditions are.
Example: Intratympanic Dexamethasone and Oral Prednisone in the Treatment of Acute SSNHL and tinnitus.
-Hold a conference for PCP’s and GP’s to raise awareness about referring patients with these complaints to trial centers and stress the need for immediacy (<1 month since onset)
-Conduct extended pure-tone audiometry and speech-in-noise tests at baseline
-Record time of patient registration relative to onset
-Deliver the drugs on whatever dosing schedule appears most prudent (usually once/week injection and a high taper of 60mg prednisone for 10 days down to 50/40/30/20/10 over the course of a month)
-Have patient follow-up testing at 1-month, 3-months, 6-months and 12-months post-administration

 

Done! Huge thanks to the volunteers for all the time they put into this excellently researched template! I'm more pumped up than ever to continue lending my own skills to Tinnitus Talk (which you should all consider too ). Let's make some change happen!

 

Done

 

Done!

 

Yes!!!! Thank you, MrCrybaby!!! I'm still waiting for your picture on the photo album thread, Mr.

Thank you, Martin!

Gracias, Adi!! Thank you!

 

Done.

 

Take Action Now!
This is HIGHLY Important!
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The National Institute on Deafness and Other Communication Disorders (NIDCD) is interested in hearing from you about your concerns with tinnitus. They are collecting information to develop a new strategic plan which will be implemented in 2022.
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The new strategic plan will influence the level of funding they will request through NIH and ultimately from Congress and the President, for tinnitus research.

- Everyone can submit their answers.

- It only takes a few minutes to fill out the form. We have provided a template with some answers that you may cut and paste or you can submit your own answers.

- We have a deadline of March 31, 2020.

This is your chance to help and make a difference.

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We need more people sending out their answers and reporting back, please.
If you do not understand how important this is or if you have any questions,
please feel free to ask away.





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People, this is a special opportunity that can't afford to be missed!

We as a community say that we want tinnitus to be further recognized, and now is a chance to help make it happen.

 

Done! Thanks @Hazel for organizing!

 

Thank you so much for helping out!!!

Hey, Bambam0. Thank you for taking the time and sending your answers.

C'mmon, we need more people doing this!!!!
It only takes a few minutes.
Let's Go!!!!!​

 

It's like pulling teeth here...bahaha…


I want to see more...

 

As they say: you can lead a horse to water, but you can’t make it drink.

 

Not yet. I've been busy with Law School work but I will either tonight or tomorrow!

 

Can we have friends/family that don't suffer from tinnitus send letters in as well or is this only for tinnitus/hyperacusis sufferers?

 

Done!

For question 1 I added an intro covering my situation in a few sentences. And for the rest of 1-5 I copied bits and pieces from provided answers that I thought were strongest and fit well together.

Thanks for the clear instructions, made it very easy!

 

Done. A huge thank you to everyone that worked on this initiative, the prepared answers helped me immensely!

 

Yes, please do share the link with your family and friends.
Share it on social media.
Anyone can submit their answers wether they have tinnitus or not.

 

Ahh..just what I like to see when I wake up! DONE!
Hahaha...thank you @Ten Letter Word!
I did the same thing. An intro on how I got tinnitus and how it affects my daily life. Then I copied and pasted the answers I wanted from the template. Super easy.

@Autumnly I was waiting for your: Done! haha...
Thank you for always helping around here.

 

Done! Had to fight against my occasional tendency to wait until the last minute but this is too important!

 

Done.

I remained consensual by taking the verbatim of the templates*. I added as the beginning of question 1: "I wanted to talk about tinnitus. I got it seven years ago due to a noise trauma. I am also a member of the forum www.tinnitustalk.com". I gave my name and my email address to give more credibility.

As a Frenchman, I thought I would wait until the last moment to do it, and let our American friends do it first, but then I changed my mind. Come on guys, 30,000 members on this forum of which 50% are American, we should normally flood the mailbox of the NIDCD.

*I would have painted a darker picture of this condition (like tinnitus can lead to suicide, not only to suicidal thoughts). But congratulations and many thanks to the team that wrote the templates; great job!

 

Can we see about having this post pinned in the support section as was done for Tinnitus Week @Markku? I feel like many people could be missing it here, the support section has much higher traffic.

 

Just an FYI for everyone that may be having difficulty receiving the automatic response confirming form submission—symbols are disallowed but appear to register properly in the system anyways. I reached out to the address provided at webmaster@nidcd.nih.gov and received this in return:

 

Thank you, FGG!!! It is so important and we only have 2 more weeks before deadline.

Thank you, Frederic! You would think more people would be running to submit their answers.

 

Right!?

Come on, people. It takes less than five minutes.

 

Yeah yeah yeah done