Inclusion body myositis clinical trial

We would like to let you know about a clinical research study that is available for patients diagnosed with Inclusion Body Myositis (IBM). The Yale School of Medicine, Department of Neurology, is currently seeking volunteers for study participation.

The purpose of this study is to use Electrical Impedance Myography (EIM), a painless, non-invasive diagnostic test to find and measure any obstructions in the flow of electric current through the muscle tissue of people with Inclusion Body Myositis (IBM).

The measurements we obtain from this assessment may possibly serve as a biomarker of disease. A ‘biomarker’ is any measurable substance that can be associated with disease progression and severity. Biomarkers may also be used to see how well the body responds to a treatment for a disease or condition.

The EIM procedure is completely painless and non-invasive. We will use electrodes placed on your skin to apply and measure a low intensity current signal passed through your muscles. This tells us how your muscles are working. The current is low voltage and does not make any changes to your muscles tissue or your skin, nor does it cause any feeling of shock or pain.

You may be eligible to participate in this study if you meet the following criteria:

    • Male or Female, age > 45 years.
    • Have clinico-pathologically defined IBM in the absence of any other significant neurological problem or cognitive dysfunction.

Your participation in the study is completely voluntary, and you have the right to participate or discontinue participation in the study at any time without penalty. Please be assured that all personal information will be kept confidential in accordance with applicable law.

Thank you in advance for your time and consideration.

If you would be interested in receiving more information about this study, please email Study Coordinator, Joan Nye (joan.nye@yale.edu), or Study Principal Investigator, Dr. Bhaskar Roy (bhaskar.roy@yale.edu), or call us at 203-737-7095 or 203-785-6577.

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Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

View more information: Myositis Support

4 Comments
  1. Jerry Williams 2 weeks ago

    Hi James and thank you for sharing some of your difficult story of living with IBM. Be sure to register for your free membership with us to ensure you receive all email updates. You can register at http://www.Understandingmyositis.org/register or by clicking Register at the top right of the page. Wishing you the very best.

  2. JAMES KIMBRELL 2 weeks ago

    I AM 69 AND HAVE BEEN IN A WHEEL CHAIR FOR 9 YEARS WITH IBM. I HAD BIOPSY IN 2007 TO DETERMINE WHY I HAD BEEN FALLING, LOSING MUSCLE AND IN GENERAL NOT BEING ABLE TO PERFORM MY MARITAL DUTIES. THESE SYMPTOMS STARTED 6 YEARS BEFOR I KNEW WHAT THE PROBLEM WAS AND I BELIEVE THEY STARTED WHEN I WAS 17 YEARS OLD IN BOOT CAMP. there I NEEDED BARS IN MY BOOTS TO KEEP THE METHEAD OF MY FEET FROM THE PRESURE OF MY BOOT ( NEVER PROVIDED) AND LATER MY ANKLE WOULD TURN FROM STEPPING ON A SMALL PEBBLE. NOT I HAVE INVERTED FEET, HAVE LOST 2 TOES DURE TO SORE INFECTIONS , HAD A KNEE OPERATED ON DUE TO INFECTION( THE MUSCLE NEVER HEALED RIGHT AND THAT WAS THE LAST STARW THAT PUT ME IN THE CHAIR. I WOULD LOVE TO BE IN YOUR STUDY.

  3. Jerry Williams 2 weeks ago

    Hi Josef. Thank you. Be sure to register for your free membership with us to ensure you receive all email updates. Understandingmyositis.org/register

  4. Józef Wojciech Planeta 2 weeks ago

    Ladies and gentlemen,
    I call Józef Wojciech Planeta, I’m 61 years old and I suffer from IBM. If the distance, ie the fact of living in Poland, is not an obstacle to participate in the project, I declare my willingness to participate. My email address wplaneta@poczta.onet.pl. I really count on any answer.
    Sincerely.

    Józef Wojciech Planeta

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