RecruitingPhase 1 / Phase 2NCT07511556
Neuromuscular
Distal Myopathy
Also known as Miyoshi myopathy, Welander distal myopathy, Laing distal myopathy, distal muscular dystrophy
Distal Myopathies are a heterogeneous group of inherited muscle disorders characterised by weakness that begins in the distal muscles of the hands and feet, in contrast to the proximal pattern seen in most muscular dystrophies. Major subtyp
ORPHA:603 ↗Gene Multiple (DYSFGene MYH7Gene GNE)Prevalence 1 in 100,000 (collectively; individual subtypes are rarer)Onset Variable; adolescence to late adulthood depending on subtypeAutosomal recessive or dominant (subtype-dependent)
2
studies recruiting now
as of 7 Sept 2026
36
studies registered in total
as of 7 Sept 2026
1
countries with a recruiting site
as of 7 Sept 2026
6 Apr 2026
most recent study posted
among recruiting studies
Recruiting trials
RecruitingNCT07502989
Muscle Health Measurements Using Electrical Impedance Myography
Showing the 2 most recently updated recruiting studies, as recorded 7 Sept 2026. Live status on each study page.
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Countries with at least one recruiting site among the studies above, 7 Sept 2026. Tap a country to search trials there.
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Registry: Jain Foundation Dysferlin Registry · Join ↗. Registries connect patients to researchers and often hear about trials first.
About Distal Myopathy
Distal Myopathies are a heterogeneous group of inherited muscle disorders characterised by weakness that begins in the distal muscles of the hands and feet, in contrast to the proximal pattern seen in most muscular dystrophies. Major subtypes include Miyoshi myopathy (DYSF mutations, early adult posterior calf weakness), Laing distal myopathy (MYH7 mutations, childhood anterior foot and finger weakness), and Welander distal myopathy (TIA1 mutations, predominantly seen in Scandinavians). Progression to proximal weakness occurs in most subtypes.
Common clinical features
Weakness beginning in the distal limbs (feet, hands, or calves depending on subtype)Foot drop or difficulty walking on tiptoes (subtype-dependent pattern)Difficulty with fine finger movementsHighly elevated creatine kinase in DYSF-related subtypesProgressive spread to proximal muscles over yearsCalf atrophy or hypertrophy (subtype-dependent)Normal or near-normal life expectancy
From Orphanet’s phenotype annotations (CC BY 4.0). Not a complete list.
Before you apply
Things trial teams commonly ask about for Distal Myopathy. Not eligibility rules; those are set by each study.
- Subtype-specific genetic diagnosis is mandatory as each distal myopathy subtype has distinct gene targets; a comprehensive neuromuscular gene panel is preferable to single-gene testing
- Muscle MRI showing a characteristic pattern of fat replacement is highly valuable for diagnosis and increasingly used as an imaging biomarker endpoint in trials
- Dysferlinopathy trials (Miyoshi/LGMD R2) have an active pipeline — if DYSF is your gene, check both LGMD and distal myopathy trial categories as the same mutation causes both phenotypes
Related conditions
Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).