Pulmonary Fibrosis News Forums Forums Treatments and Science Clinical Trials Did you get Study drug or Placebo?

  • Did you get Study drug or Placebo?

    Posted by golfpi on March 15, 2022 at 3:14 pm

    Has anybody who has been in a clinical trial ever found out if they got the Study drug or the Placebo when the trial was completed? I have completed two trials and was told I will not be told what I was given until the trial is completely finished by everyone in the trial until sometime towards the end of 2022 and mid 2023.

    sally-williams replied 6 months, 1 week ago 5 Members · 6 Replies
  • 6 Replies
  • george-poulsen

    August 21, 2023 at 4:45 pm

    Do they let you know which drug is on trial? ahead of time?

  • adele-friedman

    August 21, 2023 at 5:45 pm

    That is the gold standard for clinical trials: randomized, double-blind, meaning neither you nor the people giving/making the drug know who gets what until it’s over. It’s done this way to avoid bias.

  • pete-besio

    August 22, 2023 at 2:33 pm

    Yes to what Adele said. I am on my 4th trial, never new what I was getting, that’s the standard procedure. On trial did have an open label extension, in which you do get the study drugs. That trial was cancelled due to lack of drug efficacy. Currently on the Tyvaso trial, mostly in hope that I will make it through the trial and get to the open label after I am done!

    • marty6strings

      August 29, 2023 at 8:32 am

      The same one, I believe, that I’m on, the Teton study?  I’ll be on the open label when I’ve finished.. Did you find out after the trial period if you received RX or placebo? I’m curious.

      I’m also actively doing everything I can to mitigate the progression (I read a former post of yours).

      Be well –



  • sally-williams

    August 22, 2023 at 4:37 pm

    I too am on the Tyvaso trial and they have offered the open label upon completion (six more months). If the trial is not over at that time, should I take the extension if I don’t know if the drug was beneficial for IPF?

  • pete-besio

    August 22, 2023 at 4:52 pm

    I think that is a question for your physician. It is a Phase 3 trial, to me that indicates it has shown promise. Personally, I am throwing everything I can at IPF to slow it down. My personal goal is to make to the open label so I can use it in my battle. I also have about 6 months to go. Good luck!

  • sally-williams

    August 23, 2023 at 10:42 am

    Thank you Pete,  will talk to my doc.  I have been participating in trials since diagnosis, but the other trials didn’t pan out…keep up the fight.  We WILL win.

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