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Queen Square Centre for Neuromuscular Diseases

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The Natural History of Inclusion Body Myositis (IBM Net)

Sponsor University College Hospitals
Funder MDC
CI Dr Matt Parton, Professor Michael Hanna
Sites London Queen Square
Contact details p.machado@ucl.ac.uk
More information

Background

IBM is probably the commonest muscle disease beginning in those aged over 50.  It leads to progressive disability with a characteristic pattern of muscle involvement. But the disease is not well understood.

Its cause is unknown, there is no conclusive diagnostic test and it has no treatment. Furthermore, information on the pattern and prognosis of IBM is more based on clinical experience rather than firm fact.

The largest published data on the natural history of IBM followed only 11 patients for six months.

Primary objective

To better characterise IBM by gathering clinical data from as many cases as possible.

Serial standardised assessment (annually for five years) will chart disease progression. It will expand knowledge of the natural history of the illness.

Besides, this cohort of well-defined cases will be a valuable resource for potential future studies.