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The Yale IBM Survey

IBM is considered an “orphan disease” and thus there is not the same level of research being made or information available as with many other more prominent diseases. Because of this, we hope to provide some additional insight for patients, doctors, and researchers about IBM and how it affects those who suffer from it.

  • 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 data. We are most grateful to actively interested patients together with The Myositis Association and the Muscular Dystrophy Association who collaborated with us to make this possible.

  • Joining our Registry and providing us with your contact information is free and does not obligate you in any way to participate in any further surveys, if you don’t want to.