Community Helping Identify Research Priorities (CHIRP)

Discussion in 'Research News' started by Hazel, Oct 18, 2019.

    1. Atlas Bound
      Peeping tom

      Atlas Bound Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      05/2017
      Cause of Tinnitus:
      Noise induced
      Yep, I experience the exact same thing... N=3 already, could this be the beginning of research finding? :)
       
    2. mrbrightside614

      mrbrightside614 Member

      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      unknown; acoustic trauma/hyperacusis/sshl
      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.
       
    3. mrbrightside614

      mrbrightside614 Member

      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      unknown; acoustic trauma/hyperacusis/sshl
      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.
       
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    4. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      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.
       
    5. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      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).
       
      • Agree Agree x 1
    6. mrbrightside614

      mrbrightside614 Member

      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      unknown; acoustic trauma/hyperacusis/sshl
      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”.
       
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    7. mrbrightside614

      mrbrightside614 Member

      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      unknown; acoustic trauma/hyperacusis/sshl
      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.
       
    8. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      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.
       
    9. mrbrightside614

      mrbrightside614 Member

      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      unknown; acoustic trauma/hyperacusis/sshl
      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.
       

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