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    • #18920
      Michael L.
      Participant

      Hi All,

      Wanted to share with the community that I have just been notified that the trial I participated in for 18 months then went to the open label for 8 months has been cancelled.  The drug was Arimoclomol and sponsored by Orphazyne.  I participated through the Hospital for Special Surgery in NYC.  The drug failed to meet the endpoints established for the trial.  Last week I had heard that we could continue on the drug for another two years but that was changed today and I was told it was officially cancelled.  Trials are just that, a try and nothing ventured nothing gained but in this instance like many before me it is disappointing that there was no positive findings.  One upside is that the trial was also looking at the same drug for PIC disease and there they actually had positive findings and are going for FDA approval as a treatment for that disease.  My hopes are that although this did not pan out that there were still some findings that can and will help future studies.

      Cheers, Michael

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