Disease Directory COL6-Related Myopathy
Neuromuscular

COL6-Related Myopathy

Also known as: collagen VI myopathy, Bethlem-Ullrich spectrum, COL6-related dystrophy

Prevalence

Less than 1 in 100,000 collectively

Onset

Birth (Ullrich spectrum) to adulthood (Bethlem spectrum)

Type

Autosomal dominant or recessive

Gene

COL6A1, COL6A2, COL6A3

About COL6-Related Myopathy

COL6-Related Myopathy encompasses the clinical spectrum from Bethlem Myopathy (mild, dominant) to Ullrich Congenital Muscular Dystrophy (severe, recessive), caused by mutations in the genes encoding the three chains of collagen VI. Collagen VI is a structural extracellular matrix protein critical for maintaining the integrity of the muscle fibre basement membrane, and its deficiency leads to mitochondrial dysfunction and increased apoptosis. Disease severity correlates with the degree of collagen VI deficiency in the extracellular matrix.

Common Clinical Features

Proximal and distal muscle weakness (spectrum of severity) Joint contractures (proximal) with distal joint hyperlaxity Respiratory insufficiency (more severe in Ullrich end of spectrum) Follicular hyperkeratosis and characteristic skin changes Keloid or hypertrophic scarring Scoliosis and rigid spine Progressive loss of ambulation in severe forms

Clinical Trial Eligibility Tips

What to know before applying to COL6-Related Myopathy trials.

Spectrum-wide trials often enrol both Bethlem and Ullrich patients under the COL6-related myopathy umbrella; genetic subtype and zygosity (heterozygous vs bi-allelic) are key stratification variables

Collagen VI protein analysis by immunofluorescence on skin or muscle fibroblast culture is a key biomarker and may be an endpoint; baseline skin punch biopsy may be required

Six-minute walk test, motor function measure (MFM-32), and pulmonary function tests are standard trial endpoints across the spectrum — baseline assessments should be obtained from a specialist neuromuscular centre

Patient Resources

Patient Organization

Cure CMD

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Natural History Registry

CMDIR

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Orphanet

European reference resource for rare diseases (ORPHA:536)

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NORD

National Organization for Rare Disorders

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Find recruiting COL6-Related Myopathy trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for COL6-Related Myopathy. Updated daily.

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