There is good news for IBM patients who want to participate in the arimoclomol clinical trial. Pharmaceutical company Orphazyme recently announced the addition of several new clinical sites for the trial. This makes a total of five places in the US where eligible patients can participate.

Arimoclomol is an experimental drug that is believed to stimulate normal protein repair in the cell. Damaged proteins, called aggregates, are thought to play a role in IBM. Early clinical trials with this compound have shown promise in patients with IBM, and many TMA members have been eagerly awaiting the start of this larger, multi-center trial.

The following sites in the US  are currently accepting participants:

  • University of Colorado School of Medicine, Aurora, Colorado
  • Brigham and Women’s Hospital, Boston, Massachusetts
  • The Ohio State University, Columbus, Ohio
  • Nerve and Muscle Center of Texas, Houston, Texas
  • University of Kansas, Kansas City, Kansas (We understand that this site is already full, however.)

University College of London in the UK is also accepting participants.

Please see for inclusion criteria and contact information for site coordinators.  More sites are expected to come online soon, and TMA will update members when they do.


23 comments on “Arimoclomol clinical trial for IBM”

  1. 1
    richard carlsen on October 8, 2018

    I am looking for a trial in salt lake city

    1. 2
      Linda Kobert on October 8, 2018

      Richard, there are four additional sites expected. Not sure there will be one in Salt Lake City, but there may be one you can travel to.

  2. 3
    Gerry Hongell on October 9, 2018

    ANY in Canada?

    1. 4
      Linda Kobert on October 10, 2018

      Gerry, I’m afraid there are no sites for this study in Canada, at least not yet.

  3. 5
    Selena Antonic on October 12, 2018

    Selena Antonic
    I am looking for trial anywhere in Canada, although
    I live in Toronto.

    1. 6
      Linda Kobert on October 12, 2018

      Selena, I’m afraid there are no sites for this trial in Canada, at least not yet. Rochester, NY may be your best bet.

    2. 7
      Selena on November 16, 2018

      Hi Linda, Thank you very much for information!

  4. 8
    JoAnne Oliver on October 14, 2018

    Is Austin, Texas slated for a trial?

    1. 9
      Linda Kobert on October 14, 2018

      JoAnne, here is the info for the Nerve and Muscle Center of Texas in Houston. This is probably the closest. Contact: Zinah Rasheed, BS 713-795-0033 ext 16

  5. 10
    Jack Ferko on October 15, 2018

    Is there any plans for trials in Las Vegas, Nevada?

    1. 11
      Linda Kobert on October 17, 2018

      Jack, TMA has not been informed of all the planned sites for this trial. The company, Orphazyme, expects to have all additional sites up and running by the end of the year at the latest. All new recruiting sites and their contact info will be displayed here when they come online:

  6. 12
    Jack Luster on October 15, 2018

    Is the UCI clinical trial slated to start any time soon?

    1. 13
      Linda Kobert on October 17, 2018

      It is our understanding that, yes, the UC Irvine site should be recruiting soon.

  7. 14
    Umberto Carosi on October 15, 2018

    Would you know the eligibility requirements to get accepted?

    1. 15
      Linda Kobert on October 17, 2018

      Umberto, you can find the eligibility criteria here:

  8. 16
    John on October 30, 2018

    Any trials in Australia? Specifically Melbourne.

    1. 17
      Linda Kobert on October 31, 2018

      Hi John. I’m afraid there are no sites for this trial in Australia. One in the UK, the rest in the US. We’re aware of another IBM trial starting soon, though, so hopefully they will have a site closer to you.

  9. 18
    Elizabeth Earley on December 28, 2018

    Are you still recruiting participants for this study? If so, how can one be considered?

    1. 19
      Linda Kobert on January 3, 2019

      Elizabeth, you can find the whole list of sites for this clinical trial and contact info here:

  10. 20
    David on January 21, 2019

    UCL in London trial now under way let’s hope this drug will work for everyone.

  11. 21
    Doreen Y Jordan on February 6, 2019

    When will Arimoclomal be available for treatment?

    1. 22
      Linda Kobert on February 6, 2019

      Hello Doreen. Arimoclomol is still in clinical trials. The study is expected to take until December 2021 to complete. If it is successful and the drug actually is safe and effective, it will take some time before the FDA finally approves it and it can become available on the market. I’m sorry, but it always takes much longer than we would like.

  12. 23
    Doreen Y Jordan on February 6, 2019

    How soon will Ari.oclomal be available?

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