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

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

    1. lymebite
      Vegged out

      lymebite Member Podcast Patron 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/
       
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    2. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Advocate

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      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.

      EDIT: 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.
       
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    3. Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      Sorry to bump this thread but I recently signed up for this and would encourage others to do so as well.

      You don't need to go through any testing. Just fill out the forms as mentioned in the original post.

      You can also volunteer to donate your brain and contribute your DNA to their biobank, which they do by mailing you some swabs for your inner cheeks.

      The most annoying part of it was filling out next of kin forms, which is required and may be hard for those without many family members.
       
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