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Thread: The Latest On Gene Therapy

  1. #11
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    Quote Originally Posted by glucas View Post
    Even better, dudes, this trial is 2 months away:

    http://www.newscientist.com/article/...l#.U1gp-PldXKg
    I still wouldn't get my hopes up too high. The trial will only involve 45 volunteers, who must have a severe hearing loss(doesn't say if the severe loss has to be at all frequencies). According to the article, if successful the volunteers will only get about a 20dB improvement in their hearing, so they will still need HA's and if the trial is successful than it will be done at other institutions and if proven successful it will eventually be available to the public but it will only help 1-2% of all people with hearing loss, so it might help some, but not all.

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    Quote Originally Posted by glucas View Post
    Even better, dudes, this trial is 2 months away:

    http://www.newscientist.com/article/...l#.U1gp-PldXKg
    I still wouldn't get my hopes up too high. The trial will only involve 45 volunteers, who must have a severe hearing loss(doesn't say if the severe loss has to be at all frequencies). According to the article, if successful the volunteers will only get about a 20dB improvement in their hearing, so they will still need HA's and if the trial is successful than it will be done at other institutions and if proven successful it will eventually be available to the public but it will only help 1-2% of all people with hearing loss, so it might help some, but not all.
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  2. #12
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    Aw, Seb! We can be a little optimistic, can't we? I just read an interesting scientific journal article about this very thing, the Atoh1 gene (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3609898/). It's fascinating, really! It's probably not realistic for any of us to think this will be available in the near future since clinical trials often take 5-10 years or more, but I suspect if the first set of clinical trials go well, this might be something accessible to more people in the next 10-15 years. With all the scientific advancements, these are exciting times to have a hearing loss.

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    Last edited by KerBear; 04-27-2014 at 09:21 AM. Reason: Delete duplicate entry
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  3. #13
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    Quote Originally Posted by KerBear View Post
    Aw, Seb! We can be a little optimistic, can't we? I just read an interesting scientific journal article about this very thing, the Atoh1 gene (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3609898/). It's fascinating, really! It's probably not realistic for any of us to think this will be available in the near future since clinical trials often take 5-10 years or more, but I suspect if the first set of clinical trials go well, this might be something accessible to more people in the next 10-15 years. With all the scientific advancements, these are exciting times to have a hearing loss.

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    Kerry,

    I will get optimistic when something comes down the pike that is going to help more than 1-2% of those of us with hearing loss and will restore more than 20dB of the hearing we have lost. I know there are people who are desperate to restore their hearing, but when the medical profession puts out a press releases regarding a new study/trial that is only in it's initial phase of testing with only 45 initial participants, will only help 1-2% of those with hearing loss regain only up to 20dB of their hearing, they are doing a disservice to the community desperate for a cure and only driving those with hearing loss into believing that their hearing will be restored within a couple of years when it will be probably at least a decade until this treatment reaches the mainstream public, providing it proves to be effective. It is encouraging that the scientific community is starting to figure out what it will take to give us our hearing back, but it will be decades before viable treatments are available, not months or years as some posters would lead others to believe. Sorry, but I'm a realist and that is as optimistic as I can get.
    Last edited by seb; 04-27-2014 at 11:18 AM.
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  4. #14
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    Seb;

    Sorry...I was in a silly mood this morning when I responded to this post, so I apologize if I offended you or anyone else. I do totally understand and agree with what you're saying about articles such as this potentially doing a disservice to the HOH/(d)Deaf community. These kind of articles are exactly what give people false hope. However, I am thankful that in recent years there seems to be more research going into hearing restoration rather than just hearing "fixes", such as hearing aids and cochlear implants. And I am hopeful that if my children end up with late-onset hearing loss, the medical community may actually have the ability to restore their hearing at least somewhat.

    When I first started looking into hearing loss issues in my early twenties, knowing that at some point in the future I would more than likely have hearing loss requiring at least one hearing device, there wasn't much research on curing hearing loss. The focus of most of the research/news articles I saw at that time was on creating new devices rather than fixing the actual problem. I remember being very discouraged then and thinking that if my hearing ever got really bad, life would be "hopeless". (I don't feel as hopeless now because I know many, many people with much more hearing loss than I have who are coping reasonably well.)

    When my undergrad nursing class was studying disabilities, I was able to present them with a reasonably researched paper on the paucity of research related to hearing restoration. Even my instructors were surprised that, at that time, it seemed much more research was going into finding cures for just about every other disability except hearing loss/deafness. So the point of my post was to say that I'm excited that at least now scientists are finally starting to look in actual treatments as opposed to bandaids.
    Last edited by KerBear; 04-27-2014 at 02:13 PM.
    November, 2016

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    Wearing Oticon Alta 2 Mini RITEs since July 8/15.

  5. Default

    How can I sign up for this trial? Can anyone tell me???

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    How can I sign up for this trial? Can anyone tell me???

  6. #16
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    [QUOTE=Hatedigitalhearingaids;108995]How can I sign up for this trial? Can anyone tell me???

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    Contact the people doing the trial, fill out the phone book of paperwork they will provide you and if you have the criteria they are looking for you might get into the study. You have to remember that only 45 people will be in the first trial and of those only half will get the actual gene therapy, the others will more than likely get a plecebo because that is how medical trials work.
    Oticon Agil Pro w/streamer

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    L 10--5----10----30---50----70----85---80---80
    R 5--10----20----35---45----85----85--100--100

    SP Disc ------------- SRT
    L 88% @55db ------- L-10
    R 90% @55db------- R-25

  7. #17

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    If I were to be optimistic, it would be about the hearing implant being developed in Germany, and apparently being trialled this year:

    http://www.fraunhofer.de/en/press/re...g-at-last.html

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    Quote Originally Posted by KerBear View Post
    Aw, Seb! We can be a little optimistic, can't we? I just read an interesting scientific journal article about this very thing, the Atoh1 gene (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3609898/). It's fascinating, really! It's probably not realistic for any of us to think this will be available in the near future since clinical trials often take 5-10 years or more, but I suspect if the first set of clinical trials go well, this might be something accessible to more people in the next 10-15 years. With all the scientific advancements, these are exciting times to have a hearing loss.

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    I read somewhere that the clinical trial report will be out by September 2015. The trial itself will test the subjects over only about a two-month period. I myself am very hopeful that if all goes well, a big if, of course, Atoh1 gene therapy will be available to the public in the new few years.

    The tests on mice only showed about a 20db increase, which sounds modest but could make a big difference in peoples' practical lives.

    I am also hopeful that better results than that will show up in the human trials. IIRC, the mice experiments involved their hair cells, and presumably also their supplemental cells, being almost or entirely wiped out by ototoxic drugs. Given that Atoh1 is supposed to stimulate the growth of new hair cells from supplemental cells, the more supplemental cells a patient has left, I would think the better the therapy should work.

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    Quote Originally Posted by demetrios999 View Post
    I read somewhere that the clinical trial report will be out by September 2015. The trial itself will test the subjects over only about a two-month period. I myself am very hopeful that if all goes well, a big if, of course, Atoh1 gene therapy will be available to the public in the new few years.

    The tests on mice only showed about a 20db increase, which sounds modest but could make a big difference in peoples' practical lives.

    I am also hopeful that better results than that will show up in the human trials. IIRC, the mice experiments involved their hair cells, and presumably also their supplemental cells, being almost or entirely wiped out by ototoxic drugs. Given that Atoh1 is supposed to stimulate the growth of new hair cells from supplemental cells, the more supplemental cells a patient has left, I would think the better the therapy should work.
    There is trial card http://clinicaltrials.gov/ct2/show/study/NCT02132130
    Completition date is 2017...
    I recommend you dont be too much optimistic about this drug, i saw their presentation http://osp.od.nih.gov/sites/default/...Klickstein.pdf and its only regenerate inner hair cells which are NOT capable of hearing low intesity sounds, we need outer hair cell regenaration.
    This drug will , at its best, only help people with more then 70db hearing loss (i mean if you are deaf or almost deaf you will hear some more sounds) (inner hair cells are capable to detect sound only >70db).
    We really need inner hair cell regeneration much more becouse they not only detect low intesity sounds but also are responsible for differation of specific sounds in noise backgroud (this is what any electrical hearing aid/ci will never give you back).
    Also every hair cell has different lenght according to their resonant frequency. So, just trigger differentiation of support cell into hair cell is not enough - you also need to control their growth to grow to specific lenght in specific place in cochlea. You can imagine that special care for every single one hair cell growth out of thousands cells in micrometer sizing is hardy possible in this age.
    Also you need those supporting cells for proper hearing, so what happens when you get new hair cells but lose supporting cells?
    This trial maybe allow some people hear some few new sounds but it wont definitly help much.
    Last edited by spingee; 08-26-2014 at 06:08 AM.

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    Quote Originally Posted by spingee View Post
    The clinical trial is being ran by Dr. Hinrich Staecker of the University of Kansas.

    Below is a recent article published Dec 2, 2015 detailing some of the participants' experiences and commentary from other scientists:

    http://www.kansascity.com/news/busin...e47551535.html

    You can sign up for the study here:

    https://pioneersresearch.org/node/182


    Video below shows Staecker's commentary. Video uploaded Dec 2014.

    Last edited by anthony993; 12-15-2015 at 10:06 PM.

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