Welcome to the IBM Registry

A collaborative work between Yale Public Health, medical professionals and proactive people with IBM

About Us

You can read more about us by continuing below or you can go directly to some Frequently Asked Questions now and come back to here later.

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About the Survey

Beginning in 2012, a group of researchers at Yale undertook development of a self-reporting questionnaire of IBM patients in North America in order to collect both clinical and demographic...

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Get Involved…Help Beat IBM!

Join the Registry (see below), and if you wish, you can obtain your personal measure on the IBM Personalized Index Calculator developed by our research team with the data from our national...

  • Recruiting for new IBM study at Yale

    We would like to let you know about a clinical research study that is available for patients diagnosed with Inclusion Body Myositis (IBM). 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 (HIC# 2000023035). If you would be interested in receiving more information about this study, please call/email Study Coordinator, Joan Nye, 203-737-7095 (joan.nye@yale.edu) or Study Principal Investigator, Dr. Bhaskar Roy, 203-785-6577 (bhaskar.roy@yale.edu) or Dr. Richard Nowak (richard.nowak@yale).