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.


44 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?

  13. 24
    larry reiser on March 14, 2019

    I’m in study in SLC Utah
    U of U. Neurology dept

  14. 25
    Cirel Egelman on March 15, 2019

    I know there is an ongoing trial in Colorado. I have called there a number of times and asked to be a part of that trial. No one has responded. I have left so many messages on various answering machines. No one calls, no one e-mails. I know everyone is busy of course- but couldn’t someone respond to me.
    I was diagnosed about 5 years ago, by muscle biopsy and UC has my records of course. Perhaps
    I am speaking to the wrong people. Even just to let me know that this ongoing trial is full. Just a word from them. Absolutely nothing. Really quite depressing .

    1. 26
      Linda Kobert on March 16, 2019

      Hello Cirel. It is our understanding that most sites for this trial are already full. I’m sorry. There is, however, at least one other trial on the horizon for IBM. It is not yet recruiting, but we will let folks know when it is. Be sure you join TMA (it’s free) to receive our email newsletters.

  15. 27
    Valerie Andrews on April 14, 2019

    Are there any IBM trials in the Charleston,Sc area such as at the Medical University of South Carolina? Have had IBM for 25yrs ,now use a powerchair,hands &arms are degenerating fast.

    1. 28
      Linda Kobert on April 16, 2019

      I’m sorry but we are not aware of any clinical trials for IBM in South Carolina.

  16. 29
    Arie Zwartewaalsloot on May 6, 2019

    Hi Linda,

    Do you know if there any trails in Europe?

    1. 30
      Linda Kobert on May 6, 2019

      Arie Zwartewaalsloot: this clinical trial is now fully enrolled. They are no longer recruiting patients. There was one study site in London, but that too is filled now. We should hear some results by next year.

  17. 31
    Peter Zografou on May 6, 2019

    I’m in Canada but will to take my girlfriend’s dad to the states for this, please send me phone numbers please..😊

    1. 32
      Linda Kobert on May 7, 2019

      Peter, I’m afraid all the slots for this clinical trial are filled now. We’re hoping to hear some results next year.

  18. 33
    Adrian Espedido on June 5, 2019

    Hello Linda,

    I read that an Australian clinical trial is in the pipeline.
    Would you happen to know the timeline for recruitment? Who’s the local (AU) sponsor?

    Are you aware of other molecules or antibody that will conduct clinical trials in Australia this year?

    Appreciate your reply and any lead. Many thanks Linda.

    1. 34
      Linda Kobert on June 10, 2019

      Hello Adrian, Here is a study using testosterone and exercise to improve muscle strength in IBM patients being conducted by Prof Marilee Needham:
      Institute for Immunology and Infectious Diseases
      Murdoch University
      Building 390 Discovery Way
      Murdoch WA 6150
      Phone: +61 8 9360 1334

  19. 35
    Gerard Melora on June 21, 2019

    I have tried several different locations without success, all trial were full my question is do they increase participation in the trials or just limit it to the same people. When the trial is complete and successful how long before the medication can be released thank you

    1. 36
      Linda Kobert on June 27, 2019

      Gerard, This clinical trial needed 150 participants and all of those slots were filled within weeks of the start date. The company is no longer accepting volunteers. The company did add a few extra participants in the US, but those are all filled now too. The trial is expected to be completed in 2021. If it is successful, the drug should be available after that. It is, unfortunately, a long and tedious process. Please try to hang in there.

  20. 37
    Gerard Rushe on July 15, 2019

    Are there any Support Groups available in Ireland for IBM?

    1. 38
      Linda Kobert on July 22, 2019

      Hello Gerard! We suggest you be in touch with Myositis UK.
      This is a patient support charity organization based in England.

  21. 39
    judi dadu on September 13, 2019

    There is definately a great deal to find out about this issue.
    I like all of the points you made.

  22. 40
    Howard Gerrin on September 16, 2019

    How many participants are in the trial from Brigham and Womens? I am a patienet of Dr Amato and I was not selected. Will there be more participants being selected?

    1. 41
      Linda Kobert on September 17, 2019

      Hello Howard. We understand that there are about 10-12 participant slots at each center. This study is now full across the country. No more participants will be added. However, we are hopeful that the results will be positive and that the drug will be approved by the FDA and can then be prescribed. Unfortunately, this will still take a few years.

  23. 42
    Bob Luiz on November 5, 2019

    Is there any in California

    1. 43
      Linda Kobert on November 6, 2019

      Bob Luiz, there is a site at UC Irvine, but all slots are full. They are not accepting any new patients. I’m sorry.

  24. 44
    yusuf on March 19, 2020

    It looks that Arimoclomol will hopefully work for IBM patients at the end of the II/III trial. But, the approval of it as a treatment will take some time. How long does this normally take?
    My second question is my father has this IBM disease for almost 9 years. He is not standing or walking by himself but by the assist. So, I wonder whether this Arimoclomol will still work for him by the time it is approved for the treatment?


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