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The Inclusion Body Myositis (IBM) Disease Registry at Yale 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.
Inclusion Body Myositis (IBM) is a rare inflammatory muscular disorder. Its prevalence is not known with precision but is estimated to be in the order of 10 to 15 in every million persons. While IBM seems to occur predominantly in males aged 50 years and older, very little else is known about it etiology. The disorder presents as slow progressive weakness and withering away (atrophy) of the muscles (myositis), especially of the arms and legs. Diagnosis is usually the result of patient non-response to treatment for polymyositis. There is no cure for IBM, nor is there a standard course of treatment. The disease is generally unresponsive to corticosteroids and immunosuppressive drugs and its rate of progression appears to be unaffected by currently available treatments.
We welcome IBM patients worldwide to participate in the Registry, regardless of whether they are involved in other clinical studies or trials. Participants may complete an anonymous survey that asks about the history of their IBM disease presentation and progression, quality of life, and activities of daily living. Participants are also invited to join the Registry, to take part in ongoing surveys of their disease progression over time, and to access our Frequently Asked Questions database. We also welcome anyone interested in IBM to make use of Registry resources. The data in the Registry is available, on request, to support the work of any interested researchers and clinicians. Family and caregivers are also welcome to access the information in our publications and the Frequently Asked Questions database.