Welcome to the IBM Registry

IBMR houses one of the world’s largest systematic categorizations of IBM: its origins, its biological markers, its risk profile, its natural history, and its clinical management. The Yale Registry includes results from a self-reporting survey of more than 900 people with IBM in North America. The Registry serves as an ongoing information source for all involved with IBM, providing basic information about disease progression and other issues of interest to patients, to care givers, to treating physicians, and to researchers.

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.