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

#32
mrbrightside614 said:
Here's a more dense breakdown of the curative science referenced in question number one.

Bi-modal Stimulation

1) Dr. Susan Shore of the University of Michigan has been working on a bi-modal stimulation device for the specific treatment of tinnitus for the better part of two decades. Results from her phase one trial revealed "tinnitus reduction reached an average of 12.2 dB in the fourth week of active treatment...[and] of the 20 participants tested, 2 reported complete elimination of their tinnitus toward the end of the active treatment period". Additionally, Shore's bi-modal stimulation was compared to a placebo treatment of which no participants experienced such decrements in tinnitus volume. Shore's device is on pace to finish its final phase of testing (phase 2) in the summer of 2020.

References: ​
  • Marks, K.L., Martel, D.T., Wu, C., Basura, G.J., Roberts, L.E., Schvartz-Leyzac, K.C., Shore, S.E. (2018). Auditory-somatosensory bimodal stimulation desynchronizes brain circuitry to reduce tinnitus in guinea pigs and humans. Science Translational Medicine, 10(422). Retrieved from https://stm.sciencemag.org/content/10/422/eaal3175
2) "Lenire" is a treatment that is currently available in Ireland. While Shore's device targets the neck or jaw, Lenire targets the tongue. It should be noted that the waiting list for patient approval is 2-4 months long, while the reception of the device can take another 2-4 months after confirming participation in the study. Results from clinical trials have been encouraging, but data have now been locked until August 2020; conversely, user reports on Tinnitus Talk have yielded equivocal results.


Inner Ear Hair Cell & Cochlear Regeneration Therapies

1) Frequency Therapeutics entered the hearing regeneration space with the formulation of an intratympanic drug, "FX-322." A first-in-class drug, FX-322 is "designed to treat the underlying cause of sensorineural hearing loss (SNHL) by regenerating hair cells through activation of progenitor cells already present in the cochlea." Since tinnitus is thought to be a consequence of hearing loss, logic follows that treating hearing loss will improve or remove tinnitus symptoms. Frequency Therapeutics' phase 1/2 results determined that four of fifteen participants who had been administered a single dose of FX-322 experienced 10dB improvements in thresholds at 8kHz. Further, those same four participants had clinically significant improvements in clarity of sound, doubling their word scores in a quiet background and experiencing a 20% improvement in word scores in a noisy background at 90-days post-administration. What's even more exciting is that not only has the FDA has granted FX-322 fast-track status for the treatment of sensorineural hearing loss (SNHL)(15), but that Frequency Therapeutics has added a tinnitus experimental arm to their phase 2 experiment(16), which is set to be complete by late 3Q 2020.

References:​
2) Of the 73 Hearing Research Program applicants vying for a Congressionally Directed Medical Research Programs (CDMRP) grant—only one company, Hough Ear Institute, was awarded the $1.9 million grant. Their drug—a free radical scavenger pill "HPN-07" passed phase 1 for safety in 2015 and a paper published in 2018 reported some remarkable findings. In a study wherein Sprague Dawley rats were induced to have permanently shifted their auditory thresholds via an open field acoustic blast insult, rats that were treated with HPN-07 plus N-acetylcysteine four weeks after the initial trauma exhibited restoration of inner hair cell (IHC) ribbon synapses. Hough Ear Institute has recently licensed exclusive rights of their hearing regeneration drug—now termed "NHPN-1010", a combination of HPN-07 and N-acetylcysteine—to Oblato Inc. who will be financing the drug through phase 2 clinical trials.

References:​
3) Two drugs are being formulated for the treatment of cochlear synaptopathy—a condition that concerns the degradation of auditory nerve fibers termed "hidden hearing loss," which chiefly manifests itself as a lack of clarity upon hearing speech-in-noise.

3.1) Otonomy, Inc. are currently phase 1/2 trials with their sustained-release BDNF (brain-derived neurotrophic factor) drug, "OTO-413" with results expected in the second half of 2020. Non-clinical studies by Otonomy "have demonstrated that local administration of BDNF repairs ribbon synapses damaged due to noise trauma or exposure to ototoxic chemicals and restores hearing function."

References:​

3.2) Pipeline Therapeutics has developed "PIPE-505"—a gamma secretase inhibitor that aims to regenerate "the cochlear synapse, [which] should augment signal-to-noise processing and manifest as improved speech-in-noise comprehension." Their phase 1b/2a study is due to commence in the near future.

References:​

KV7 Potassium Channel Modulators

1) Professor Thanos Tzounopoulos received a $2 million grant in 2018 to finance research on "RL-81"—a reformulation of an epilepsy drug, "retigabine/ezogabine" which had been anecdotally reported to have diminished tinnitus symptoms. While the drug was discontinued in 2017 after the emergence of a host of problematic side-effects, many users on the Tinnitus Talk forums experienced a dose-response effect regarding relief of their symptoms.

References:​
2) Knopp Biosciences is developing a drug for epilepsy, "KB-3061" that is aimed to modulate the same channels as RL-81. While epilepsy is the company's primary target, they've list tinnitus as a potentially applicable condition.

References:​
I'd really like curative research to be highlighted in terms of its immediacy of need in hopes to expedite FDA approval/release timelines.
Click to expand...
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
 
#33
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!
 
#36
MrCrybaby said:
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!
Click to expand...

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

Martin69 said:
Done
Click to expand...
Thank you, Martin! :huganimation:

Adi said:
Done!
Click to expand...
Gracias, Adi!! Thank you! :thankyousign:
 
#38
Take Action Now!
This is HIGHLY Important!
GettyImages-462420509-805effbc22a14ac2adc819fe907accda.jpg​


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.
​
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.

​
there-is-strength-in-numbers-quote-1.jpg


​
 
#39
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.


7ad9c429af8ba13526f1913931935b90.png



​
 
#40
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.
 
#42
#43
aot said:
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.
Click to expand...
It's like pulling teeth here...bahaha… :LOL::ROFL::ROFL:
time.gif



I want to see more...
done.png images.png
 
#47
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! (y)
 
#49
Jaysterk said:
Can we have friends/family that don't suffer from tinnitus send letters in as well or is this only for tinnitus/hyperacusis sufferers?
Click to expand...

This process is open to anyone! So yes, please ask your friends and relatives to make a submission as well, excellent idea :)
 
#50
Jaysterk said:
Can we have friends/family that don't suffer from tinnitus send letters in as well or is this only for tinnitus/hyperacusis sufferers?
Click to expand...
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.
 
#51
Ten Letter Word said:
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! (y)
Click to expand...

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 said:
Done. A huge thank you to everyone that worked on this initiative, the prepared answers helped me immensely!
Click to expand...
@Autumnly I was waiting for your: Done! haha... :LOL::ROFL:
Thank you for always helping around here.
:huganimation::huganimation:
 
#52
Done! Had to fight against my occasional tendency to wait until the last minute but this is too important!
 
#53
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!
 
#54
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.
 
#55
MrCrybaby said:
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.
Click to expand...
Very good idea. Done!

I want to see more regular members of ours doing this, it takes so little effort...

:thankyousign:
 
#57
Frédéric said:
I would have painted a darker picture of this condition (like tinnitus can lead to suicide, not only to suicidal thoughts).
Click to expand...

We discussed this within the working group and opted to stick to evidence-based information at population level, where there is no strong evidence (that we could find) of a causal link - some studies were done but with contradictory results. There is however strong evidence that tinnitus increases the probability of suicidal thoughts, so we went with that.

That said, of course, everyone is free to explicitly state in their submission that tinnitus can lead to suicide, and we've certainly seen real live examples of that here (sadly).
 
#58
FGG said:
Done! Had to fight against my occasional tendency to wait until the last minute but this is too important!
Click to expand...
Thank you, FGG!!! It is so important and we only have 2 more weeks before deadline.
Frédéric said:
Done. 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.
Click to expand...
Thank you, Frederic! You would think more people would be running to submit their answers.
 

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