Disease Directory Inclusion Body Myositis
Neuromuscular

Inclusion Body Myositis

Also known as: IBM, sporadic IBM, sIBM

Prevalence

1 in 14,000 to 1 in 28,000 (most common inflammatory myopathy over age 50)

Onset

Adults over age 45; mean onset in 6th decade

Type

Sporadic (acquired, not inherited)

About Inclusion Body Myositis

Inclusion Body Myositis is the most common acquired muscle disease in adults over 50, characterised by progressive muscle weakness with a distinctive pattern of finger flexor and quadriceps involvement, often asymmetric. Muscle biopsy shows rimmed vacuoles, congophilic amyloid deposits, and cytoplasmic inclusions containing TDP-43 and p62. The pathogenesis involves both inflammatory and degenerative components, and the disease is refractory to standard immunosuppressive therapy.

Common Clinical Features

Finger flexor weakness (difficulty gripping, opening jars) Quadriceps weakness causing falls and difficulty rising from chairs Asymmetric muscle weakness pattern Dysphagia (in up to 60% of patients) Foot drop Progressive loss of ambulation (wheelchair dependency within 10–15 years of onset) Mild facial weakness

Clinical Trial Eligibility Tips

What to know before applying to Inclusion Body Myositis trials.

IBM diagnosis must meet ENMC 2011 or 2013 diagnostic criteria (clinico-pathological or clinical IBM); a muscle biopsy report confirming rimmed vacuoles or endomysial inflammation with CD8+ T-cell invasion is usually required

Anti-cN1A (Mup44) antibody positivity supports diagnosis and may be an eligibility biomarker in some trials; serum samples for antibody testing should be obtained before applying

Trials frequently use grip strength dynamometry and the IBM Functional Rating Scale (IBMFRS) as primary endpoints; baseline functional scores should be documented

Patient Resources

Patient Organization

Myositis Association

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Natural History Registry

IBM Natural History Study

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Orphanet

European reference resource for rare diseases (ORPHA:611)

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NORD

National Organization for Rare Disorders

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Find recruiting Inclusion Body Myositis trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Inclusion Body Myositis. Updated daily.

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