Inclusion body myositis Nervous System Diseases Inflammatory myopathy, not elsewhere classified
Conditions
Interventions
Participants in the project will be asked to volunteer to undergo a standardised assessment at least annually for a five-year period. This will consist of background information on the history of the
Sponsors
University College London Hospitals NHS Foundation Trust (UK)
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Any person who meets the established diagnostic criteria for inclusion body myositis. The age criteria set above in section A16 are to allow for one criterion being age at onset of over 30, while the upper limit is set so as not to exclude any participant on the grounds of being too old. Griggs' diagnostic criteria for IBM: Clinical features: 1. Illness duration of more than six months 2. Male and female, age at onset greater than 30 years 3. Proximal and distal weakness of arms and legs, with finger flexion weakness, wrist flexion more than extension weakness, and quadriceps weakness. Laboratory features: 1. Creatine kinase (CK) less than 12 times normal 2. Neurophysiology consistent with myopathy Muscle biopsy features: 1. Inflammation with mononuclear cell invasion of non-necrotic fibres 2. Vacuolated fibres 3. Intracellular amyloid and/or 15?18 nm filaments on electron microscopy If all the muscle biopsy features above are present, then the disease is labelled as "definite" (regardless of the presence or absence of other criteria). To meet the "probable" standard of disease, then the muscle biopsy must show at least inflammation and vacuolation of fibres, plus all the clinical and laboratory features above.
Exclusion criteria
Exclusion criteria: Does not meet inclusion criteria
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Rate of strength decline over time | — |
Secondary
| Measure | Time frame |
|---|---|
| No secondary outcome measures | — |
Countries
England, United Kingdom
Outcome results
None listed