Community Helping Identify Research Priorities (CHIRP)

[Atlas Bound]

Not really related to the thread, but I also experience this more often than before getting tinnitus.

Yep, I experience the exact same thing... N=3 already, could this be the beginning of research finding?

 

[mrbrightside614]

Not sure if this is apt to "research priorities" per se, but my NEED to find a cure is related to the overarching anxiety that "it can always get worse" in tinnitus's completely unpredictable nature.

Honestly, the difference between a 1 and a 3 on tinnitus is not even consequential to me these days (although below television level dB makes a marked difference in my mood, e.g. a 5 to a 3 is much more meaningful than a 3 to a 1).

Regardless of this variation in loudness, there is always this undercurrent of anxiety that it's still there and it will likely not stay at this level, for better or worse. Further, my concerns extend to the comorbidities and afflictions associated with the condition that are present REGARDLESS OF WHETHER HABITUATION HAS BEEN ACHIEVED. For instance, my mother has had tinnitus since she doesn't even know when. She does not let it bother her as well as she consciously can during her waking hours, but she still has trouble 1) getting to sleep; 2) staying asleep; 3) with anxiety that I would bet my life's earnings is related to the inability for the mind to completely relax. THESE ARE ISSUES THAT NO AMOUNT OF THERAPY OR COGNITIVE RETRAINING CAN SURMOUNT.

If you have tinnitus, your stage 4 sleep is shit, full stop. Thus, it affects concentration and productivity, which potentially affects earnings and lifestyle affordances. Tinnitus prematurely ages one regardless of the severity of the condition and affects their quality of life, no matter how well habituated one is to their subjective condition.

 

[mrbrightside614]

Can we set up a system that researchers can use to contact sufferers based on location if they ever need a patient for research or general questions? An online system that connects us altogether and at arms reach?

I'd like it if when researchers conclude something warrants further research from one of their studies, that they actually follow up with it.

I like this idea. We could set up a registry with a patient profile consisting of:

Age
Cause of tinnitus
Directly aligned comorbidities (hyperacusis, TMJ)
Years afflicted
Quantitative measures of disability (THI, etc.)

Listing medications, although voluntary, may not comply with HIPAA.

 

[MattS]

I like this idea. We could set up a registry with a patient profile consisting of:

Age
Cause of tinnitus
Directly aligned comorbidities (hyperacusis, TMJ)
Years afflicted
Quantitative measures of disability (THI, etc.)

Listing medications, although voluntary, may not comply with HIPAA.

This is exactly right. Our leverage, our currency, is our selves. *WE* are what the researchers need to conduct their research. And so, yes, we need a registry created.

However, this alone does not get us in the game of increasing our say in research priorities. What we need is a registry, with more information on patients than researchers can easily collect themselves, that we control (this final part is what is key - a registry that researchers can use is great, and will facilitate research somewhat, but it won't give us any skin in the game).

Essentially this is the dataset that I suggested earlier, which researchers can use to kickstart their research, and save them time/effort/money. A researcher can them ask to *officially collaborate with Tinnitus Talk*, and get the benefits of having all of this patient data at their disposal. This was my first suggestion with this thread got started, and I'm convinced it remains the best way to get a serious hand in the game.

 

[MattS]

Not sure if this is apt to "research priorities" per se, but my NEED to find a cure is related to the overarching anxiety that "it can always get worse" in tinnitus's completely unpredictable nature.

Honestly, the difference between a 1 and a 3 on tinnitus is not even consequential to me these days (although below television level dB makes a marked difference in my mood, e.g. a 5 to a 3 is much more meaningful than a 3 to a 1).

Regardless of this variation in loudness, there is always this undercurrent of anxiety that it's still there and it will likely not stay at this level, for better or worse. Further, my concerns extend to the comorbidities and afflictions associated with the condition that are present REGARDLESS OF WHETHER HABITUATION HAS BEEN ACHIEVED. For instance, my mother has had tinnitus since she doesn't even know when. She does not let it bother her as well as she consciously can during her waking hours, but she still has trouble 1) getting to sleep; 2) staying asleep; 3) with anxiety that I would bet my life's earnings is related to the inability for the mind to completely relax. THESE ARE ISSUES THAT NO AMOUNT OF THERAPY OR COGNITIVE RETRAINING CAN SURMOUNT.

If you have tinnitus, your stage 4 sleep is shit, full stop. Thus, it affects concentration and productivity, which potentially affects earnings and lifestyle affordances. Tinnitus prematurely ages one regardless of the severity of the condition and affects their quality of life, no matter how well habituated one is to their subjective condition.

This absolutely applies to research priorities mrbrightside614. Not sure it helps us control those priorities, but what you've said is bang on important, and so getting it jotted down as an important research priority is itself very important.

In fact, I think that would be another of my suggestions: Tinnitus Talk should devise an official white paper that outlines the most crucial research priorities from the patient perspective. Something akin to what Neil Bauman put together for ATA regarding potentially ototoxic medications. Look how much airplay that has gotten?

Optimally this wouldn't be a laundry list of all suggested topics, but rather a very tightly culled list of the most pressing priorities from our perspective. I'd be happy to help with this (i.e. liaise regarding language that is likely to resonate with researchers).

 

[mrbrightside614]

This absolutely applies to research priorities mrbrightside614. Not sure it helps us control those priorities, but what you've said is bang on important, and so getting it jotted down as an important research priority is itself very important.

In fact, I think that would be another of my suggestions: Tinnitus Talk should devise an official white paper that outlines the most crucial research priorities from the patient perspective. Something akin to what Neil Bauman put together for ATA regarding potentially ototoxic medications. Look how much airplay that has gotten?

Optimally this wouldn't be a laundry list of all suggested topics, but rather a very tightly culled list of the most pressing priorities from our perspective. I'd be happy to help with this (i.e. liaise regarding language that is likely to resonate with researchers).

I actually just did a research critique on tinnitus problem domains. They pulled responses from the singular question "why is tinnitus a problem?" from patients over the span of 20 some years at Jastreboff's clinic in the UK. They coded them after peer- and focus group review and ended up boiling down the domains into 18 separate categories. If this is of interest to anyone at Tinnitus Talk, I can distill the paper here and add anything I think is relevant. For example, my concerns highlighted above. If I knew that it was just a sound and it didn't mess up my sleep or lead to neurodegeneration of some kind, I would much more easily be able to habituate to it. IMO "habituation" should be re-termed to "resignation".

 

[mrbrightside614]

Essentially this is the dataset that I suggested earlier, which researchers can use to kickstart their research, and save them time/effort/money. A researcher can them ask to *officially collaborate with Tinnitus Talk*, and get the benefits of having all of this patient data at their disposal. This was my first suggestion with this thread got started, and I'm convinced it remains the best way to get a serious hand in the game.

Like you pointed out earlier, our lack of financial capital pretty well hamstrings us in terms of having a say in research conduction. Having an open dialogue between Tinnitus Talk and researchers to guide research priorities would be a blessing, and I don't hold many illusions regarding the influence of research beyond this point. Thus, just opening the participant pool to this wealth of likely more severe sufferers at Tinnitus Talk would be a step in the right direction. At least until the friend of the brother of the lobbying guy gets back to us, but I'm not exactly holding my breath on that.

 

[MattS]

Like you pointed out earlier, our lack of financial capital pretty well hamstrings us in terms of having a say in research conduction. Having an open dialogue between Tinnitus Talk and researchers to guide research priorities would be a blessing, and I don't hold many illusions regarding the influence of research beyond this point. Thus, just opening the participant pool to this wealth of likely more severe sufferers at Tinnitus Talk would be a step in the right direction. At least until the friend of the brother of the lobbying guy gets back to us, but I'm not exactly holding my breath on that.

Not sure I agree on this. There are a few well-funded labs in the tinnitus field, but there are many more starving scientists that just wish they could conduct research that didn't come with a big price tag. If we had all the patient data collection already done, this could allow many more researchers to gain access to important data than would otherwise be possible.

 

[mrbrightside614]

If we had all the patient data collection already done, this could allow many more researchers to gain access to important data than would otherwise be possible.

I'll defer to your expertise on this, but I would think the major chunk of the capital required to investigate therapies would be related to actual formulation of the device/substance and then in its procedures and testing.

 

[Hazel]

Hey folks!

What patients expect from tinnitus research?

We're gonna take the next step here with a concrete demonstration to researchers about what patients expect from research. During Tinnitus Week we'll conduct a poll to select the best tinnitus research publication of the past few months. ALL OF YOU WILL GET A VOTE!!!

Ranking research papers should give off a clear signal to the research community about what patients expect. We've spoken to the folks from Tinnitus Research Initiative (TRI) and they are supportive of this plan

Pre-selecting papers - what criteria to use?

My question to you now is: What criteria should we use to make a preselection of papers to vote on? There are about 50 papers per month on tinnitus, which we'll need to whittle down to 10 or so for the Tinnitus Week poll. Based on which criteria should we make this selection? (You may also volunteer to help us select the papers, by the way.)

 

[Badger19]

This is a hard one. For us patients, accessability and 'layman terms' are important to understand what they're talking about. But for the scientists this won't be very important.

Could we use relevance as a criteria? And by relevance I mean if a paper researches habituation, causes of tinnitus & hyperacusis, a specific treatment... Some studies are rather psychological than medical.

I'll see what I can find related to tinnitus. I'd like to suggest Elouise Koops' papers since she's being funded by this community.

Oh, and please don't leave out hyperacusis

 

[Hazel]

This is a hard one. For us patients, accessability and 'layman terms' are important to understand what they're talking about. But for the scientists this won't be very important.

Agreed. Maybe we can look at whether the author explains the practical implications of their work so it does not remain only theoretical?

Could we use relevance as a criteria? And by relevance I mean if a paper researches habituation, causes of tinnitus & hyperacusis, a specific treatment... Some studies are rather psychological than medical.

Could you elaborate further? I'm a bit in doubt as to whether we want to exclude the psychological studies upfront. It might be better to leave them in and let the community decide via their vote whether they're important enough?

I do think we need some kind of criterion about relevance to patients, just not sure how to formulate it...

Oh, and please don't leave out hyperacusis

Good point!

Thanks for your input @Badger19

 

[Frédéric]

@Hazel: when you launched this thread on October the 18th, I said to myself "nice question but very difficult to answer".

But I thought about it and came to the conclusion that this forum is already by itself (with all its tools) a great compass for researchers:

1) Tinnitus Talk has become, I think, the biggest forum across the world for tinnitus sufferers (I am pretty sure it goes beyond all the forums in each country, maybe even more than all of these if they were together) with almost 30,000 members*, and with a lot of members active (who at least read the discussions every day). For example, I refer to Tinnitus Talk everyday and I dropped all French forums.

2) A lot of members have shared their history in the "introduce yourself" category, that means a wealth of information about histories of tinnitus onset, the way to manage it, attempted therapies,etc. for researchers who could compile statistics (although it is true that it takes time to read).

3) There were the big surveys (like with the 5,000 respondents one) conducted by your team of directors which has greatly benefited researchers, maybe we can re-do these surveys because of the number of forum members growing*.

4) A lot of us report daily/systematically all research news about/related to tinnitus in a good manner: the information is well organized (not scattered). We can have a great view about all the research done or in progress about tinnitus and hyperacusis.

5) Most importantly, belonging to the previous point, a lot of contributors share their opinions (scam or good news...) and, certain members provide their expertise (because they have a biomedical background). To the contrary, they can express their concerns when there is a lack of research in a certain field (like NT-3 according to @JohnAdams if I understood correctly).

So I think that the most we can offer to the researchers is already in this forum, they can sign up to Tinnitus Talk and browse all the threads in here.

* I think you have thought about it, about the fact to recontact all former tinnitus sufferers. It will be important to re-do the surveys (with the same questions) with a bigger sample.

 

[JohnAdams]

@Hazel: when you launched this thread on October the 18th, I said to myself "nice question but very difficult to answer".

But I thought about it and came to the conclusion that this forum is already by itself (with all its tools) a great compass for researchers:

1) Tinnitus Talk has become, I think, the biggest forum across the world for tinnitus sufferers (I am pretty sure it goes beyond all the forums in each country, maybe even more than all of these if they were together) with almost 30,000 members*, and with a lot of members active (who at least read the discussions every day). For example, I refer to Tinnitus Talk everyday and I dropped all French forums.

2) A lot of members have shared their history in the "introduce yourself" category, that means a wealth of information about histories of tinnitus onset, the way to manage it, attempted therapies,etc. for researchers who could compile statistics (although it is true that it takes time to read).

3) There were the big surveys (like with the 5,000 respondents one) conducted by your team of directors which has greatly benefited researchers, maybe we can re-do these surveys because of the number of forum members growing*.

4) A lot of us report daily/systematically all research news about/related to tinnitus in a good manner: the information is well organized (not scattered). We can have a great view about all the research done or in progress about tinnitus and hyperacusis.

5) Most importantly, belonging to the previous point, a lot of contributors share their opinions (scam or good news...) and, certain members provide their expertise (because they have a biomedical background). To the contrary, they can express their concerns when there is a lack of research in a certain field (like NT-3 according to @JohnAdams if I understood correctly).

So I think that the most we can offer to the researchers is already in this forum, they can sign up to Tinnitus Talk and browse all the threads in here.

* I think you have thought about it, about the fact to recontact all former tinnitus sufferers. It will be important to re-do the surveys (with the same questions) with a bigger sample.

Maybe we could recruit someone that is knowledgeable about AI stuff to scan an archive of the site to try and generate meaningful statistics?

Regarding this idea, I would be happy to help fund it.

 

[Badger19]

Agreed. Maybe we can look at whether the author explains the practical implications of their work so it does not remain only theoretical?

That seems like a good idea to me.

Could you elaborate further? I'm a bit in doubt as to whether we want to exclude the psychological studies upfront. It might be better to leave them in and let the community decide via their vote whether they're important enough?

I do think we need some kind of criterion about relevance to patients, just not sure how to formulate it...

While I'm the last person to say that some domains of science are not important or a waste of money, I'm fairly confident that most people here are interested in papers which focus on 1) causes of tinnitus & hyperacusis and 2) Actual treatments.

I realize that funding for different types of studies comes from different sources, so again I'm not against papers about habituation and the like.

We could also use the number of citations, but I'm unsure if this would be a good criteria for new papers.

Maybe we could recruit someone that is knowledgeable about AI stuff to scan an archive of the site to try and generate meaningful statistics?

I think we'd be better off creating a survey. Analyzing those results would be much easier and faster.

 

[Hazel]

While I'm the last person to say that some domains of science are not important or a waste of money, I'm fairly confident that most people here are interested in papers which focus on 1) causes of tinnitus & hyperacusis and 2) Actual treatments.

I realize that funding for different types of studies comes from different sources, so again I'm not against papers about habituation and the like.

Yeah, I'm also fairly confident of that. But my point was that instead of us making that selection on behalf of the community, it would be a lot more powerful for the community to demonstrate this preference by voting. Then we can go back to the research community as say: "Our vote has shown that patients prefer research focussing on x/y/z." The idea is that the community's vote will steer the research community in a certain direction.

@Hazel: when you launched this thread on October the 18th, I said to myself "nice question but very difficult to answer".

But I thought about it and came to the conclusion that this forum is already by itself (with all its tools) a great compass for researchers:

1) Tinnitus Talk has become, I think, the biggest forum across the world for tinnitus sufferers (I am pretty sure it goes beyond all the forums in each country, maybe even more than all of these if they were together) with almost 30,000 members*, and with a lot of members active (who at least read the discussions every day). For example, I refer to Tinnitus Talk everyday and I dropped all French forums.

2) A lot of members have shared their history in the "introduce yourself" category, that means a wealth of information about histories of tinnitus onset, the way to manage it, attempted therapies,etc. for researchers who could compile statistics (although it is true that it takes time to read).

3) There were the big surveys (like with the 5,000 respondents one) conducted by your team of directors which has greatly benefited researchers, maybe we can re-do these surveys because of the number of forum members growing*.

4) A lot of us report daily/systematically all research news about/related to tinnitus in a good manner: the information is well organized (not scattered). We can have a great view about all the research done or in progress about tinnitus and hyperacusis.

5) Most importantly, belonging to the previous point, a lot of contributors share their opinions (scam or good news...) and, certain members provide their expertise (because they have a biomedical background). To the contrary, they can express their concerns when there is a lack of research in a certain field (like NT-3 according to @JohnAdams if I understood correctly).

So I think that the most we can offer to the researchers is already in this forum, they can sign up to Tinnitus Talk and browse all the threads in here.

* I think you have thought about it, about the fact to recontact all former tinnitus sufferers. It will be important to re-do the surveys (with the same questions) with a bigger sample.

Awesome ideas! We are actually doing something like this already. We are working with a researcher from Magdeburg university who has a PhD student who is using some kind of AI to analyse our forum and determine what topics people care most about. It's early days, and may be worth building on further if we get interesting results. @JohnAdams, thanks for the generous offer, we'll get back to you on that!

We are also planning to build a database collecting data from 1000s of patients over many years. Our survey data is great, but in the end it's just a snapshot in time, we need to track how people are doing over years, i.e. how does their tinnitus change, is this correlated to specific factors in their life, etc. Huge project though, and we could certainly use volunteers!

All this being said, I think we want to move along with the voting idea I proposed above as well. I see that as a very concrete and direct way of influencing the research community and steering them in a certain direction. Real patient-driven research, that's what we want to push for!!!

 

[mrbrightside614]

Pre-selecting papers - what criteria to use?

My question to you now is: What criteria should we use to make a preselection of papers to vote on? There are about 50 papers per month on tinnitus, which we'll need to whittle down to 10 or so for the Tinnitus Week poll. Based on which criteria should we make this selection? (You may also volunteer to help us select the papers, by the way.)

Could we get some examples of these criteria? I don't know how broad we're talking. I'm mostly concerned with:
1) Pharmacological interventions for the treatment of acute tinnitus (steroid therapies, TNF-A inhibitors)
2) Peptide (IGF, NT-3) and stem cell therapies for the treatment of hearing loss and chronic tinnitus
3) Neuromodulatory interventions for the treatment of tinnitus
4) Research concerning the origins of tinnitus and hyperacusis
5) Tinnitus comorbidities and impact of quality of life

 

[mrbrightside614]

I also would be REALLY interested in seeing correlation data that evaluates perceived tinnitus frequency with emotional distress. My mom whose had tinnitus for as long as she can remember recently matched her tinnitus at 5325 Hz which explains why she could habituate way easier than me whose tinnitus is 8 kHz+.

 

[Candy]

It's not just the frequency though, for me it's the intensity which I guess is the loudness...

 

[Tinniger]

.
OT: One top priority should be to first and foremost develop an exact classification of tinnitus types because something like this doesn't exist.
The basic research that is necessary to treat tinnitus is to be able to classify patients according to their type of tinnitus because every type of tinnitus will need another therapy. For example, somatosensory tinnitus needs different treatment than tinnitus that is caused by dead hair cells and problems in the auditory cortex. It is useless to research an all-or-nothing-therapy

At first I enthusiastically agreed, I am a supporter of the idea of tinnitus subtyping. But..., - let's take somatosensory tinnitus. Publications say that 60-80% of all tinnitus patients can modulate their tinnitus somatically, even if it is clearly caused by noise damage. Has it been proven at all that all those who have developed tinnitus as a result of a noise damage have damaged hair cells? Even those who have no hearing loss at all?

And, - don't many "healthy" people also have an ear noise when they move their jaws sideways?

Without objectifiable findings (e.g. high-resolution MRI of hair cells or nerves), subtyping will remain difficult.

 

[Gabriel5050]

If anyone cares what I want, I would like the magic pill to end tinnitus. But in the end, it doesn't matter what it is or what it's called as long as it works!