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IBM Clinical Trials

IBM Clinical Trials


Year PubMed ID N Duration in Months Placebo (Yes/No)
AZA + MTX   1993 8393509 11 3-6 No
IVIG   1993 8492940 4 2 No
IVIG   1994 8058161 9   No
Prednisone   1995 7617187 8 6-12 No
IVIG   1997 9065553 19 6 Yes
IVIG   2000 10701893 22 12 Yes
IVIG+prednisone   2001 11171896 37 3 Yes
IFN-beta-1A-low   2001 11706093 30 6 Yes
MTX   2002 11891832 44 11 Yes
Oxandrolone   2002 11940697 19 6 Yes
MTX+ATL vs MTX   2003 12874415 11 12 No
IFN-beta-1A-high   2004 15326251 30 6 Yes
Etanercept   2006 16432140 9 17 No
Alemtuzumab NCT00079768 2009 19454532 13 12 No
BYM338 NCT01423110 2014 25381300 14 2 Yes
Lithium NCT00917956 -   ?   No
Etanercept NCT00802815 -   ? 12 Yes
Arimoclomol NCT00769860 -   24 4 Yes
In Progress      
BYM338 NCT012925209 -   240 52 Yes


Dur=duration; AZA=azathioprine; MTX=methotrexate; IVIG= intravenous immunoglobulin; IFN=interferon; ATL=anti-T lymphocyte globulin; 6MWD=6 minute walk distance

QMT=quantitative muscle testing; MMT=manual muscle testing; NSS = neuromuscular symptom score; QST=questionnaire


How will my donation help IBMF?

The Inclusion Body Myositis Foundation needs your help to accomplish its mission of finding the cause of and treatment for inclusion body myositis. Given the near exclusive nature of this disease, funding is difficult to come by and research grants are not sufficient to meet long-term research needs. Your contributions will enable us to continue working on a cure for IBM, and will help to:

  • Advance scientific understanding of inclusion body myositis through research
  • Understand the causes of IBM and develop effective methods of treatment for the disease

All funds received by the Foundation are used to enable the organization to support and carry out IBM research, and increase understanding and awareness of the disease. The IBMF is a private operating foundation and a registered 501 (c) (3) organization. We are very grateful for all the donations we receive in support of our work in understanding, stopping and reversing IBM muscle damage.

To make a donation by check, please make payable to The IBM Foundation and mail to:

IBM Foundation
897 Washington Street, #600005
Newton, MA 02460

(You may contact us via email using the form below.)


For Physicians and Researchers


Much of our current understanding of IBM comes from the study of IBM muscle pathology, which typically shows both immunological and degenerative processes.

Immunology: IBM muscle viewed under the microscope usually contains inflammatory cells, particularly T-cells. Cells are often congregated into nodular collections.
Although the invasion of muscle cells by T cells is frequently emphasized, most T-cells surround or displace myofibers (muscle cells) with very few invading them.
It is likely that T-cells are injuring myofibers by their secreted products.

Microarray studies published in 2002 showed an abundance of immunoglobulin transcripts in IBM muscle and led to the recognition in 2005 that plasma cells (CD138+ differentiated B cells) are transcriptionally active, producing and secreting immunoglobulins within IBM muscle, and in 2007 that these plasma cells are antigen-directed and clonally expanded. An autoantibody marker of IBM was discovered in 2011.

Nuclear degeneration: Rimmed vacuoles and the redistribution of nuclear nucleic acid-binding proteins indicate some form of nuclear degeneration is occurring in IBM.



Faced with IBM and the physical disability it signals, the questions that patients ask are simple. What are the causes of IBM? What are the treatment options available to us? At IBMF, we are working unceasingly to find answers to these questions. The IBMF is a private operating foundation, which means it conducts research directly, as well as working with other research institutions.

Recent research projects that the IBMF has been involved in are:

An Inclusion Body Myositis Blood Test – research at Harvard Medical School identified a protein in the blood of most patients with IBM that can be used to aid diagnosis. The identification of this protein also has unequivocally settled long-standing controversy in the field as to whether or not there is autoimmunity directed against a normal muscle component in IBM – with an answer of “yes”. IBM is certainly, in part, an autoimmune disease.

Developing a rationale for the use of BYM338 in clinical trials of inclusion body myositis – studies of muscle samples from patients with IBM suggested that a drug therapeutic candidate called BYM338 might be useful in the treatment of IBM. A subsequent clinical trial provided further evidence and the Food and Drug Administration granted Breakthrough Therapy designation for BYM338 in IBM in August of 2013.


An extensive range of helpful resources have been compiled for you as part of IBMF’s effort to support the understanding and awareness of Inclusion Body Myositis. These resources include medical literature on IBM, links to previous and ongoing IBM Clinical Trials, and other educational information on IBM.

Real-time Medical Literature Searches

PubMed , a free search engine maintained by the National Library of Medicine (NLM) at the National Institutes of Health, allows you to access references, abstracts and articles from the MEDLINEdatabase. Listed below are PubMed links to search results on IBM.

More information on IBM

  • The IBMF Clinical Trials page
    View a listing of previous and ongoing clinical trials for IBM, with published reviews for applicable trials.
  • Bill Tillier's IBM website
    This site provides a basic introduction to IBM, critical overview articles, and a body of research/medical information that includes summaries/reviews of some of the major scientific literature on IBM.
  • The Muscular Dystrophy Association
    Find up-to-date information and helpful resources on Muscular Dystrophy, compiled with input from researchers, physicians and people affected by the disease.

Contact Us


897 Washington Street, #600005
Newton, MA 02460