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Thread: Rhofade approved by the FDA

  1. #11
    Senior Member johnabetts's Avatar
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    When I was a student (100 years ago!) I took part in some medical trials. Part of the agreement was that all of information that I may have gained during the trial was the exclusive property of the drugs company on whose behalf the trial was carried out.

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    One could imagine trial participants trash talking a new product with incomplete information - a very risky situation for drug companies.
    Get Rosacea News here - https://rosacea-support.org

  3. #13
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    Quote Originally Posted by redtere View Post
    Is this site the biggest English speaking Rosacea forum on the net?
    It is very strange in the age of the internet we never get people who are (supposedly Rosacea sufferers) involved in trials never posting anonymously on this site (and I mean mentioning it after the trial has finished). Unless there is another other big forum or Rosacea site I am missing that they all go to. Something fishy going on with these trials.
    I find facebook etc pretty useless for Rosacea posts.
    I agree , its very fishy indeed . I can't remember anyone ever coming on here saying they were part of the mirvaso trials for example .

  4. #14
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    Because IMHO statistically it wouldn't happen. A lot, really A LOT of people don't know about the forum or any other support pages. They suffer from rosacea, they have to work, they have families.
    For years I have had rosacea but I never bothered to take action and look for some kind of forum for rosaceans. As above was said, the forum members are very tiny, tiny veeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeery tiny part of the sick people around.
    If you have problem with cancer, do you look on forum or just take treatment from doctors.....

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    Quote Originally Posted by Forsberg View Post
    Because IMHO statistically it wouldn't happen. A lot, really A LOT of people don't know about the forum or any other support pages. They suffer from rosacea, they have to work, they have families.
    For years I have had rosacea but I never bothered to take action and look for some kind of forum for rosaceans. As above was said, the forum members are very tiny, tiny veeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeery tiny part of the sick people around.
    If you have problem with cancer, do you look on forum or just take treatment from doctors.....
    I disagree , People google everything now , google Rosacea Forum and guess what comes up first

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    Quote Originally Posted by David Pascoe View Post
    One could imagine trial participants trash talking a new product with incomplete information - a very risky situation for drug companies.
    It works both ways ,Or you could have Drug companies lying about the trials , a very risky situation for would be patients , e.g Mirvaso

  7. #17
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    Hi, I too find it mysterious how there have never been people on here that have reported being involved in clinical trials for Rosacea medication. I personally did almost sign up for the UK clinical trials for adoption of Mirvaso on the NHS, however pulled out before signing the paperwork for personal reasons.

    I personally think a lot of clinical trials include patients that don't truly suffer with Rosacea, after all it is a difficult condition to diagnose in an accurate way, due to the absence of a test. Therefore in my opinion this is why the clinical data for Mirvaso, obtained through clinical trials, was fairly positive despite not one member on this forum (as far as I am aware) reporting positive long term use.

    I find it strange that the official Rhofade website does not currently contain any before and after photographs of clinical trial participants. Hopefully these will be uploaded soon and we can get an idea of the effect.

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    On Rhofade website they offer sample. Apparently only in the US.
    Anyone in the US willing to try to obtain it?

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    Quote Originally Posted by buratino29 View Post
    On Rhofade website they offer sample. Apparently only in the US.
    Anyone in the US willing to try to obtain it?
    The samples are only for Derms and Doctors to give to their patients .

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    Will mean that it might take a while before it gets sent around the world.

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