Temporal Bone Registry — Sign Up to Help Research for a Cure

Discussion in 'Research News' started by lymebite, Apr 20, 2016.

    1. lymebite
      Surrender

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Here is something you can do today that will further the cause of finding a cure for tinnitus.

      The Temporal Bone Registry is like being an organ donor but for ear research. There is no cost. As with being an organ donor, it won't help you, but it could help others suffering from tinnitus.

      The program is run by the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services, and serves as the national medical research agency in the United States.

      Having more people with tinnitus register may help speed the pace of research to find a cure, so it would be good for everyone on TTalk in the United States to consider signing up. More information is available at the link, but the easiest thing to do is email them, and they will mail you a full information package and the forms you need to fill out and return. It is a bit of work to fill out the forms, but it does not cost anything and it could help make a difference!

      http://tbregistry.org/
       
      • Like Like x 4
    2. Leonardo Aguiar
      Relaxed

      Leonardo Aguiar Member

      Location:
      Brazil
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Probably some weird drug I took
      I'm wondering why no one reacted to this thread.

      Are we that much hypnotized by our own individual dream world that we forgot about the whole?

      How many of you signed up?
       
      • Good Question Good Question x 1
    3. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Team Tech Team Research Team Awareness

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Bewitched ears
      Yeah... do you have to live in the United States to qualify? Maybe there is something similar in other countries?

      So what's unique about this? Targeted organ donation to targeted research? You donate your temporal bone, your cochlea and your balance organ to research labs that do research on pathologies in these organs?

      How do they collect these organs? Is your dead body sent to them and they pick what they want and then return the rest? I know it sounds horrible, as if it's a dinner party where you get to pick what you want and throw the rests to the dogs. I don't mean it like that. I just wonder how they orchestrate all this logistically. On that note, I recently read that progenitor cells in mice cochlea can survive postmortem in about 5 days. So is time an issue?

      I see logos of Massachusetts Eye and Ear, Harvard Medical School, and NIH NIDCD (too long to care to spell it out). What if I want my cochlea to go to Stefan Heller and his research team at Stanford? How does that work out? Not at all?

      Regardless who gets it, I can think of donating my organs. But unless I move to the US, I don't think my organs will be going to either Harvard or Stanford anytime soon. Maybe that's a flaw? Maybe we should exchange organs across borders? As long as someone, some lab, in some country gets the job done and actually finds a definite cure.
       
    4. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Team Tech Team Research Team Awareness

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Bewitched ears
      I just checked. They ask for City, State and Zip. So it's a US thing only. The form is not that long or complicated.
       
    5. Leonardo Aguiar
      Relaxed

      Leonardo Aguiar Member

      Location:
      Brazil
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Probably some weird drug I took
      Yes, it's a US thing only because other countries have different set of rules regarding donations.

      There is no real research here in Brazil that would make use of my precious most interesting bizarre cochlea.
      I am a donor here, my organs will he available for other people who are always in big queues.
      If I lived in US I would certainly sign up. Me and my doctor, who also came from Harvard, are talking to some people to come up with a way to make these special cases possible. He believes they have promising researches.

      Regarding what they do with the useless left overs of my flesh, I don't care, maybe put it back in the ground, instead of burning it and radiating my energy to space. Let the worms, microbes come in and out of my body, and the energy content that I have assembled over my life time consuming the fauna and flora of this earth. My body then returns to them. This is the cycle of life.
       
    6. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Team Tech Team Research Team Awareness

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Bewitched ears
      Yeah, I don't think there are many countries who have targeted donation programs like this. Donations in general, yes, but not something like this.

      Seriously? No inner ear research? I'm surprised... Are there no hearing impaired people in Brazil? Maybe the the government is not interested because it's not a big national health problem yet?

      Kudos to you! Let's hope it doesn't come to that for a long time. But if it does, you know it might save someone's life.

      Who are "they"? The doctor and his team? Is this doc doing the research in Brazil or US?

      Indeed!

      But maybe there is a way to save more of the organs? Maybe someone needs a kidney? Let them have it, let everyone take what they need. Which brings on the question, what's so special about this US donation program for cochlea?

      I mean, can't we have someone just donate the whole body, and let everyone take what they need, be it research or transplantation? Why does it matter? Why have targeted cochlea donations? What's so special about that? Is this because human cochleas are being wasted in the world? No one wants them so they leave them as left overs and burn or bury them along with the remains of the body?

      This brings on another question. Is there such thing as cochlea transplantation? I know it sounds stupid, because everyone has a unique shape of head bones and all that. But if they could make it work that would be wonderful. Maybe this is something worth looking into? How unique are our cochleas? Can they be transplanted? That's what I would like to know.

      I don't expect you to answer all these questions. :) They are mostly rhetorical.
       
    7. Leonardo Aguiar
      Relaxed

      Leonardo Aguiar Member

      Location:
      Brazil
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Probably some weird drug I took
      There is a very interesting research going on in Brazil now, they get people who got "cured" and then applies a mathematical equation to find out what changed in their brains. Lots of people involved. Seems promising as well, but I have no use for them. Here's the link:

      https://translate.google.com/transl...ender-o-zumbido-no-ouvido/&edit-text=&act=url

      Regarding the researches within NIDCD, all I know is from the website and the trust of my doctor. And it matters because they need people like us to achieve something, and that's why they're asking for donors.

      I don't believe there is such thing cochlea transplant yet, but there are implants with an electronic device.
       
    8. SilverSpiral
      Sad

      SilverSpiral Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      ACOUSTIC TRAUMA
      So do they even consider "cured" people may have had some level of change in the middle ear (either healing, or further/more complete degeneration) which resulted in their symptoms changing? Or is it only focused on brain?
       
    9. Leonardo Aguiar
      Relaxed

      Leonardo Aguiar Member

      Location:
      Brazil
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Probably some weird drug I took

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