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.

  • 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 survey. By answering a few short questions about yourself, your medical history, and your physical functioning, the Calculator will provide you with a personalized graph showing you how your score on the IBM functional rating scale (a measure originally developed by C.E. Jackson and Colleagues) compares to that of all the patients in our survey. The Calculator is completely free, completely confidential, and we will never save or share any of the information you type into it.