Fact-checked by Grok 2 weeks ago

Muscular dystrophy

Muscular dystrophy (MD) comprises a group of more than 30 inherited genetic disorders characterized by progressive weakness and degeneration of skeletal muscles that control voluntary movement, often extending to cardiac and muscles. These conditions arise from in genes essential for and , leading to in muscle fibers and eventual replacement by fat and . The primary symptom is , which varies in onset, severity, and affected muscle groups depending on the specific type. The most prevalent form, (DMD), results from mutations in the DMD gene on the , which encodes the protein crucial for maintaining muscle cell integrity during contraction. DMD follows an pattern, predominantly affecting males with an incidence of approximately 1 in 5,000 live male births, while females are typically carriers. Other notable types include (a milder dystrophinopathy), (featuring muscle stiffness and multisystem involvement), limb-girdle muscular dystrophy, and , each linked to distinct genetic defects. Global prevalence across all muscular dystrophies is estimated at around 3.6 per 100,000 individuals, though DMD and Becker types account for a significant proportion. Currently, no curative treatments exist, with management focusing on symptom alleviation through corticosteroids to delay progression, physical therapy, orthopedic interventions, and ventilatory support to extend survival. Prognosis varies widely; for instance, untreated DMD often leads to loss of ambulation by age 12 and death in the second or third decade from cardiorespiratory failure, though multidisciplinary care has improved life expectancy. Recent advances in gene therapy, such as micro-dystrophin delivery via adeno-associated viral vectors, have shown promise in restoring partial dystrophin expression and improving motor function in early clinical trials for DMD patients.

Definition and Classification

Core Definition

Muscular dystrophy encompasses a heterogeneous group of more than 30 inherited genetic disorders characterized by progressive weakness and degeneration of skeletal muscles, resulting from mutations in genes that encode proteins essential for muscle , , and . These conditions primarily affect voluntary muscles, leading to muscle fiber breakdown, replacement by fibrous or fatty , and eventual loss of mobility, though the heart and respiratory muscles may also be involved in certain forms. Unlike acquired muscle disorders, muscular dystrophies stem from mutations rather than environmental or infectious causes, with onset varying from infancy to adulthood depending on the specific type. At the molecular level, the core pathology arises from disruptions in the dystrophin-glycoprotein complex or other muscle-associated proteins, which normally link the to the , providing mechanical reinforcement during contraction. For instance, in the most common form, , mutations in the DMD gene abolish production, rendering muscle cells vulnerable to damage from everyday mechanical stress and triggering chronic and . Inheritance patterns are predominantly X-linked recessive, autosomal recessive, or autosomal dominant, with de novo mutations accounting for up to one-third of cases in some subtypes, underscoring the genetic etiology without reliance on external triggers. Diagnosis relies on clinical presentation corroborated by , as histopathological findings like fiber size variation and are supportive but not specific. While muscular dystrophies share progressive muscle wasting as a hallmark, they differ in affected muscle groups, rate of progression, and extramuscular manifestations, such as or cognitive involvement, necessitating subtype-specific classification for management. No curative therapies exist as of 2025, with interventions focused on symptom palliation, including corticosteroids to delay weakness, , and emerging therapies targeting specific mutations, though efficacy varies and long-term data remain limited. Prevalence estimates indicate Duchenne and forms affect approximately 1 in 3,500 to 5,000 male births worldwide, highlighting the disorders' significant burden despite their rarity in aggregate.

Major Types and Subtypes

(DMD) is the most prevalent and severe form of muscular dystrophy, accounting for approximately 50% of cases in affected males due to X-linked recessive mutations in the DMD gene, leading to absent protein and rapid muscle degeneration. Symptoms emerge between ages 2 and 5, manifesting as proximal , Gowers' sign (using hands to rise from the floor), calf , and elevated serum levels exceeding 10,000 U/L. Progression results in loss of ambulation by age 12 on average, , and , with median survival around 27 years even with ventilation. Becker muscular dystrophy (BMD), a milder allelic variant of DMD caused by in-frame DMD mutations producing truncated but partially functional , affects about 5% of dystrophinopathy cases. Onset typically occurs in late childhood or , with slower progression allowing ambulation into the 30s or beyond in many patients; cardiac involvement remains a primary cause of morbidity, often requiring monitoring from age 10. Serum levels are elevated but lower than in DMD, and weakness may precede overt symptoms. Myotonic dystrophy encompasses two primary autosomal dominant subtypes: type 1 (DM1), caused by CTG repeat expansions in the DMPK gene, and type 2 (DM2), due to CCTG repeats in CNBP. DM1, the more common form, presents with (delayed muscle relaxation), distal weakness, cataracts, and multisystem features like cardiac conduction defects and ; congenital DM1, with over 1,000 repeats, causes and respiratory issues in neonates, while classic adult-onset involves progressive facial and neck weakness. DM2 features milder proximal weakness, less severe , and later onset, often sparing congenital presentation but including painful muscle stiffness. Both types show , with worsening severity across generations due to repeat instability. Facioscapulohumeral muscular dystrophy (FSHD) arises from autosomal dominant derepression of the DUX4 gene on chromosome 4q35, leading to toxic protein expression in , and affects 1 in 8,000 to 15,000 individuals. It characteristically involves asymmetric weakness of (e.g., inability to whistle), scapular stabilizer (), and humeral muscles, with onset typically in the second decade; progression is variable, with 20% remaining non-disabling and rare respiratory or cardiac involvement. Subtypes include FSHD1 (95% of cases, from D4Z4 repeat contraction) and FSHD2 (hypomethylation defects), both sharing clinical overlap. Limb-girdle muscular dystrophy (LGMD) comprises a heterogeneous group of over 30 autosomal subtypes, predominantly recessive (LGMDR), targeting pelvic and muscles with variable onset from childhood to adulthood. Common subtypes include LGMDR1 (calpain-3 deficiency, 12-30% of cases in the U.S., with early proximal weakness and cardiomyopathy risk) and LGMDR2 (dysferlinopathy, affecting teens with distal involvement and ); dominant forms (LGMD1) like LGMD1B () feature contractures and cardiac arrhythmias. Progression varies widely, with some subtypes preserving ambulation lifelong while others lead to wheelchair dependence within 10-20 years.
TypeInheritanceTypical OnsetKey FeaturesPrevalence Estimate
Duchenne (DMD)X-linked recessiveAges 2-5Proximal weakness, , early wheelchair1 in 3,500-5,000 male births
Becker (BMD)X-linked recessiveAdolescence/adulthoodSlower progression, cardiac focus1 in 18,000-30,000 male births
Myotonic DM1Autosomal dominantVariable (congenital to adult), distal weakness, multisystem1 in 8,000
FSHDAutosomal dominantTeens/20sFacial/scapulohumeral weakness, asymmetric1 in 8,000-15,000
LGMD (various)Mostly autosomal recessiveChildhood-adulthoodGirdle weakness, heterogeneousVaries by subtype; overall rare

Genetic and Pathophysiological Foundations

Genetic Mutations and Inheritance Patterns

Muscular dystrophies encompass a heterogeneous group of disorders primarily resulting from mutations in genes encoding proteins critical for muscle structure and function, such as , protein kinase, and others involved in the dystrophin-glycoprotein complex. These mutations disrupt sarcolemmal integrity, leading to progressive muscle degeneration. Inheritance patterns vary across subtypes, including X-linked recessive, autosomal dominant, and autosomal recessive modes, with over 30 distinct forms identified. Approximately 70% of cases arise from mutations or carrier transmission, underscoring the . The most prevalent form, (DMD), affects about 1 in 3,500 to 5,000 male births and is caused by out-of-frame s—predominantly large deletions (60-70%), duplications (10%), or point mutations—in the DMD gene at locus Xp21, which spans 2.4 megabases and contains 79 exons. These alterations abolish protein expression, essential for linking the to the . DMD follows an X-linked recessive pattern, wherein hemizygous males manifest the disease while females are typically asymptomatic carriers due to ; carrier females have a 50% risk of transmitting the mutation to offspring, with affected sons comprising half of male progeny. Becker muscular dystrophy (BMD), a milder allelic variant occurring in 1 in 18,000 to 30,000 males, involves in-frame mutations in the same DMD gene, yielding truncated but partially functional levels (typically 10-40% of normal). Inheritance mirrors DMD's X-linked recessive mode, with symptoms onset often delayed until adolescence or adulthood. type 1 (DM1), the most common adult-onset muscular dystrophy with prevalence of 1 in 8,000, stems from pathogenic CTG trinucleotide repeat expansions (typically >50 repeats, up to thousands) in the 3' of the DMPK gene on chromosome 19q13.3. This autosomal dominant disorder exhibits , where repeat instability during increases expansion size across generations, correlating with earlier onset and severity. A single expanded suffices for disease manifestation, with 50% transmission risk to offspring regardless of sex. Facioscapulohumeral muscular dystrophy (FSHD) type 1, accounting for 95% of cases and affecting 1 in 8,000 to 15,000 individuals, arises from of the D4Z4 macrosatellite repeat array on 4q35 from 11-100 units to 1-10 units, coupled with a permissive 4qA . This epigenetic derepression permits toxic expression of the DUX4 from the distal D4Z4 unit, which is normally silenced in tissues. FSHD follows autosomal dominant inheritance, with variable and a 50% per offspring; de novo contractions occur in 10-30% of sporadic cases. Limb-girdle muscular dystrophies (LGMDs) comprise diverse subtypes primarily affecting proximal muscles, with over 30 genes implicated in the dystrophin-associated complex, , or membrane repair pathways. Most (LGMD2/R types, ~90%) are autosomal recessive, requiring biallelic mutations (e.g., in CAPN3 for LGMD2A or SGCA for LGMD2D), thus necessitating parents and a 25% recurrence risk in siblings; autosomal dominant forms (LGMD1/D types, ~10%) involve heterozygous mutations (e.g., in MYOT) with 50% offspring risk. varies, with LGMD2A being common in certain populations at 1 in 15,000.
Major TypeGene/LocusCommon Mutation TypesInheritance PatternApproximate Prevalence
Duchenne (DMD)DMD (Xp21)Out-of-frame deletions/duplications/point mutationsX-linked recessive1:3,500-5,000 males
Becker (BMD) (Xp21)In-frame deletions/duplicationsX-linked recessive1:18,000-30,000 males
Myotonic Type 1 (DM1)DMPK (19q13.3)CTG repeat expansion (>50)Autosomal dominant1:8,000
FSHD Type 1D4Z4/DUX4 (4q35)Repeat contraction (1-10 units)Autosomal dominant1:8,000-15,000
Limb-Girdle (most)Various (e.g., CAPN3, SGCA)Biallelic loss-of-functionAutosomal recessiveVaries; e.g., LGMD2A 1:15,000 in some regions

Molecular and Cellular Mechanisms

The molecular and cellular mechanisms of muscular dystrophies center on genetic defects that compromise muscle fiber stability, repair, and homeostasis, leading to progressive degeneration. In dystrophinopathies like (DMD), frameshift or nonsense mutations in the DMD gene abolish functional , a 427-kDa cytoskeletal protein that anchors filaments to the via the dystrophin-glycoprotein complex (DGC). The DGC, comprising dystroglycans, sarcoglycans, sarcospan, and syntrophins/dystrobrevins, links the intracellular to the , buffering mechanical stress during contraction and modulating signaling pathways such as production via neuronal (nNOS). Absence of destabilizes the , causing microtears, elevated extracellular calcium influx through stretch-activated channels, and subsequent activation of calcium-dependent proteases like calpains, which degrade myofibrillar proteins and exacerbate . This initiates a vicious cycle: necrotic fibers release damage-associated molecular patterns, recruiting inflammatory cells including macrophages and T-lymphocytes, which produce cytokines (e.g., TNF-α, IL-6) that amplify via from dysfunctional mitochondria and . Satellite cells, muscle stem cells essential for regeneration, exhibit impaired self-renewal and differentiation due to dystrophin deficiency, leading to exhaustion, while persistent drives fibrotic replacement by from activated myofibroblasts. Limb-girdle muscular dystrophies (LGMD) often involve mutations in DGC-associated proteins, such as sarcoglycans in LGMD-R2 subtypes, yielding analogous sarcolemmal fragility and secondary cascades of calcium dysregulation, , and , though severity varies with residual complex function. In LGMD-R1 calpainopathy (LGMD-R1), capn3 mutations disrupt calpain-3's role in remodeling and IκBα degradation for signaling, impairing myofiber integrity and repair without primary DGC loss. Distinct mechanisms characterize non-DGC dystrophies; (FSHD) arises from D4Z4 repeat contractions on 4q35, causing epigenetic derepression and ectopic expression of the transcription factor DUX4 in myofibers. DUX4 induces a fetal-like gene program, generates double-stranded that activates innate immune responses via PKR and MAVS, stabilizes mRNA to promote , and disrupts RNA quality control through interference, culminating in and . type 1 features CTG repeat expansions in DMPK, yielding mutant that sequesters splicing factors like MBNL1 into nuclear foci, mis-splicing (CLCN1) and other transcripts to cause , , and gradual myofiber via impaired excitation-contraction coupling and regenerative deficits.

Clinical Presentation

Primary Signs and Symptoms

Muscular dystrophies manifest primarily through progressive weakness and degeneration of skeletal muscles, with symptoms varying by subtype in onset age, severity, and distribution. The hallmark is symmetric proximal muscle weakness, often beginning in the lower limbs and pelvis, leading to impaired mobility. Early indicators include delayed achievement of motor milestones, such as walking beyond 18 months, frequent falls, and difficulty climbing stairs or rising from a seated position. In (DMD), symptoms emerge around ages 2-3 years, featuring a waddling , , and Gower's —using hands to "climb" the when standing from the due to hip . Calf pseudohypertrophy, where muscles appear enlarged but are replaced by fat and , coexists with atrophy elsewhere. Muscle cramps and elevated serum levels may precede overt . Becker muscular dystrophy (BMD) presents similarly but milder, with onset from age 5 to early adulthood, including lumbar lordosis, waddling gait, and quadriceps weakness; affected individuals often retain ambulation into adulthood. Myotonic dystrophy type 1 features —prolonged muscle contraction after voluntary effort, especially in hands and face—alongside distal weakness, ptosis, and temporalis wasting; systemic signs like cataracts and often accompany. Facioscapulohumeral muscular dystrophy (FSHD) primarily affects facial and muscles, causing difficulty whistling, closing eyes fully, or raising arms overhead, with winged scapulae. Across types, , myalgias, and contractures develop as muscles weaken, though cognitive or cardiac symptoms in some subtypes are secondary to primary muscular pathology.

Disease Progression and Complications

Disease progression in muscular dystrophy varies significantly by subtype, with (DMD) exhibiting the most rapid deterioration, typically leading to loss of ambulation by age 12 and premature death in the third or fourth decade due to respiratory or cardiac failure. In DMD, initial proximal muscle weakness emerges between ages 2 and 5, progressing to of calves, Gowers' maneuver for rising, and eventual wheelchair dependence; respiratory complications, including diaphragmatic weakness and hypoventilation, manifest in the late teens, while develops in nearly all cases by age 18, contributing to 20% of mortality even with interventions. Orthopedic issues such as (affecting 90-95% of non-ambulatory patients) and joint contractures further exacerbate mobility loss, often requiring surgical correction. Becker muscular dystrophy (BMD), a milder allelic variant of DMD, shows delayed onset around age 5-15 and slower progression, with many patients retaining ambulation into their 40s or beyond; however, cardiac involvement remains prevalent, manifesting as dilated cardiomyopathy in up to 70% by age 40, which is the leading cause of death. Complications include arrhythmias, fractures from falls due to weakness, and less frequent respiratory failure compared to DMD, though growth impairment and cognitive challenges can occur. Facioscapulohumeral muscular dystrophy (FSHD) progresses gradually over decades, often beginning with facial and weakness in or early adulthood, with lower limb involvement in 80% of cases but loss of ambulation in only 5-10% lifetime; the disease course is variable and asymmetric, with exacerbations following periods of stability. Complications are primarily musculoskeletal, including winged scapulae, requiring orthoses, and rare extramuscular issues like or vasculopathy in severe cases, though approaches normal absent respiratory compromise. Across subtypes, common complications stem from chronic muscle degeneration and immobility, encompassing recurrent from weakened cough mechanisms, gastrointestinal dysmotility leading to or risk, and renal dysfunction in advanced DMD due to immobility and dehydration. Monitoring for these via serial , , and functional assessments is essential, as early intervention can mitigate some risks despite inexorable advancement.

Diagnostic Approaches

Clinical Evaluation and Testing

Clinical evaluation of muscular dystrophy begins with a comprehensive history, emphasizing the age of symptom onset, pattern and progression of (typically proximal and symmetric), presence of delayed motor milestones in children, and family history suggestive of X-linked, autosomal recessive, or dominant inheritance patterns. Physical examination focuses on assessing muscle strength using standardized scales such as the Medical Research Council scale, evaluating gait abnormalities (e.g., waddling gait or Gowers' sign in Duchenne muscular dystrophy), tendon reflexes (often preserved early but diminished later), and signs of pseudohypertrophy, particularly in calves for dystrophinopathies. Initial laboratory testing includes measurement of serum creatine kinase (CK) levels, which are characteristically elevated—often 10 to 100 times the upper limit of normal in early stages due to muscle fiber leakage—serving as a sensitive but nonspecific indicator of ongoing muscle damage across dystrophy subtypes. Electromyography (EMG) and nerve conduction studies are employed to confirm a myopathic process, revealing short-duration, low-amplitude motor unit potentials with early recruitment, while distinguishing from neurogenic disorders by normal or near-normal nerve conduction velocities. Muscle , though increasingly superseded by , provides histopathological confirmation through evidence of dystrophic changes such as fiber size variation, , inflammatory infiltrates, regeneration, , and fatty infiltration; or may assess protein expression (e.g., absence in Duchenne cases). Ancillary , including muscle MRI, can delineate patterns of involvement (e.g., selective muscle sparing or replacement by fat and ) to guide site selection or subtype , with T1-weighted sequences highlighting fatty degeneration quantitatively via metrics like the muscle fat .

Genetic Confirmation and Differential Diagnosis

Genetic confirmation of muscular dystrophy relies on molecular analysis to detect pathogenic variants in disease-specific genes, establishing a definitive in the majority of cases. For (DMD) and (BMD), testing targets the DMD gene on the , where deletions or duplications account for 65-80% of mutations, detected via (MLPA) or as first-line methods. Subsequent next-generation sequencing identifies point mutations, small insertions/deletions, or other variants in up to 30% of cases, with sensitivity exceeding 95% when combined. Samples are typically obtained from peripheral blood leukocytes, though or enable prenatal . For limb-girdle muscular dystrophy (LGMD) subtypes, targeted gene panels or whole-exome sequencing interrogate multiple loci such as CAPN3, DYSF, or SGCA, given the genetic heterogeneity involving over 30 genes. Myotonic dystrophy confirmation involves (PCR) or for CTG repeat expansions in DMPK (type 1) or CCTG in CNBP (type 2), with allele sizes correlating to and severity. (FSHD) is verified by detecting contractions in the DUX4 D4Z4 repeat array on 4q35, often via or methylation-sensitive PCR, distinguishing FSHD1 (95% of cases) from FSHD2. Elevated (CK) levels support suspicion but require genetic corroboration, as historical muscle biopsies assessing expression or protein aggregates are now supplementary, reserved for ambiguous cases or to avoid invasive testing in children. Differential diagnosis differentiates muscular dystrophies from mimicking neuromuscular conditions through integrated clinical, electrophysiological, and genetic evaluation. (SMA), caused by SMN1 deletions, presents with hypotonia and fasciculations but spares CK elevation and shows denervation on (EMG), confirmed by SMN1 copy number analysis rather than dystrophinopathy panels. Congenital myopathies, such as nemaline or central core disease, exhibit non-progressive weakness with specific findings (e.g., rod bodies) and mutations in genes like NEB or RYR1, contrasting the progressive fibrosis in dystrophies. Metabolic disorders like Pompe disease (GAA deficiency) feature vacuolar myopathy on and respond to replacement, distinguishable by absent family history of X-linked in DMD. Inflammatory myopathies (e.g., ) show perifascicular atrophy and autoantibodies, with EMG revealing irritative potentials unlike the myopathic changes in dystrophies; corticosteroid responsiveness further aids distinction. involves fatigable weakness and positive acetylcholine receptor antibodies, ruled out by normal muscle histology and response to inhibitors. For intermediate phenotypes, such as between DMD and BMD, genetic variant classification per ACMG guidelines assesses pathogenicity based on reading frame disruption, with in-frame mutations predicting milder courses. Carrier testing for female relatives uses the same assays, informing reproductive risks, while unsolved cases (5-10% in DMD/BMD) may warrant research-grade long-read sequencing. Early genetic delineation optimizes prognosis and trial eligibility, as misdiagnosis delays targeted therapies like exon-skipping for amenable DMD variants.

Treatment Strategies

Symptomatic and Supportive Care

Symptomatic and supportive care for muscular dystrophy emphasizes multidisciplinary interventions to alleviate symptoms, preserve function, and avert complications such as contractures, , and , particularly in progressive forms like (DMD). regimens, including stretching and low-resistance exercises, are recommended to maintain joint mobility and muscle strength while minimizing fatigue, with evidence indicating delayed loss of ambulation when initiated early. supports daily activities through adaptive equipment and training, enhancing independence in self-care tasks. Orthopedic management involves orthotic devices, such as ankle-foot orthoses, to stabilize gait and prevent , often prescribed before full loss of ambulation in DMD patients around age 10-12 years. Surgical interventions, including for correction when curvature exceeds 20-30 degrees, improve posture and pulmonary function, with guidelines advocating preoperative pulmonary optimization. Foot releases address equinovarus deformities, prolonging tolerance. Respiratory support is critical as diaphragmatic weakness progresses, with (NIV) initiated when falls below 50% predicted or nocturnal occurs, extending survival by years through improved . Assisted cough techniques, using mechanical insufflation-exsufflation devices, clear secretions and reduce risk during intercurrent illnesses. Regular monitoring via every 6 months guides escalation to daytime NIV or tracheostomy in advanced stages. Nutritional interventions address and growth needs, with tubes recommended when oral intake fails to meet caloric requirements, preventing that exacerbates respiratory compromise. Assistive technologies, including powered wheelchairs and standing frames, promote mobility and bone health post-ambulation loss. Psychological support and counseling mitigate emotional burdens, integrated within comprehensive models.

Pharmacological Interventions

Corticosteroids remain the primary pharmacological intervention for (DMD), the most common and severe form of muscular dystrophy, with moderate-quality evidence from randomized controlled trials (RCTs) indicating improvements in muscle strength, function, and pulmonary metrics over 12 months compared to . , typically dosed at 0.75 mg/kg/day, prolongs ambulation by 2-3 years and slows progression of and respiratory decline, though long-term use is associated with side effects including weight gain, , and growth suppression. , approved by the FDA in 2016 at 0.9 mg/kg/day, demonstrates comparable efficacy to in preserving muscle strength over 12 weeks in boys aged 5-15 years, with potentially reduced weight gain but similar risks of cataracts and bone density loss. Histone deacetylase (HDAC) inhibitors like givinostat (Duvyzat), approved by the FDA in March 2024 for ambulatory children aged 6 and older with DMD, target muscle inflammation and fibrosis, showing in phase 3 trials a 1.3-point slower decline in functional motor scores over 72 weeks versus placebo, alongside reductions in fat infiltration on MRI. This approval was based on clinical endpoints rather than surrogates, distinguishing it from prior therapies, though gastrointestinal side effects and neutropenia require monitoring. Antisense oligonucleotide (ASO) therapies for , applicable to subsets of DMD patients amenable to specific corrections (e.g., up to 29% for 45, 51, 53), include (FDA-approved 2016 for 51), golodirsen (2019 for 53), viltolarsen (2020 for 53), and casimersen (2021 for 45). These drugs induce partial production via intramuscular or intravenous administration, but approvals relied on accelerated pathways using levels as surrogates, with limited confirmatory evidence of clinically meaningful improvements in motor function or survival; post-approval studies have shown modest increases (0.3-5% of normal) but no consistent benefits in ambulation or cardiac outcomes. For other muscular dystrophies such as limb-girdle (LGMD) or facioscapulohumeral (FSHD), no FDA-approved disease-modifying pharmacological agents exist as of 2025, with management limited to off-label corticosteroids or NSAIDs for symptomatic inflammation, which lack robust efficacy data and may exacerbate in some cases. Ongoing trials, such as p38 MAPK inhibitors like losmapimod for FSHD, explore epigenetic targets but remain unproven. Across types, pharmacological strategies emphasize early initiation to mitigate progression, balanced against adverse effects, with no interventions restoring full function or curing the underlying genetic defects.

Experimental and Gene-Based Therapies

Gene-based therapies for muscular dystrophy primarily target (DMD), the most common and severe form, caused by mutations in the DMD gene leading to deficiency. These approaches include viral vector-mediated gene replacement, antisense oligonucleotide (ASO)-induced to restore partial production, and emerging techniques like CRISPR-Cas9. While some have received regulatory approval, many remain experimental due to limited long-term efficacy data, variable expression levels (often 20-80% of normal), and challenges such as immune responses to vectors or off-target edits. Adeno-associated virus (AAV) vectors deliver truncated micro-dystrophin genes to muscle cells, aiming to bypass the large size of the full DMD gene. Delandistrogene moxeparvovec (Elevidys), developed by Sarepta Therapeutics, received FDA accelerated approval on June 22, 2023, for ambulatory children aged 4-5 years with confirmed DMD mutations, based on micro-dystrophin expression as a surrogate endpoint rather than definitive clinical benefits. Approval expanded in June 2024 to all ambulatory patients regardless of age, with full approval for this group, but restrictions were imposed in June 2025 for non-ambulatory patients due to safety concerns including acute liver injury and myocarditis risks. Confirmatory trials like EMBARK showed transient motor function improvements (e.g., North Star Ambulatory Assessment scores) but failed to meet primary endpoints for sustained benefit, highlighting reliance on biomarkers over functional outcomes. Similar AAV-micro-dystrophin candidates, such as those from RegenxBio (RGX-202) and Solid Biosciences (SGT-003), are in phase 1/2 trials as of 2025, with preclinical data showing muscle strength gains in animal models but human efficacy pending. Exon-skipping therapies use to mask mutated during mRNA splicing, producing truncated but partially functional applicable to 13-80% of DMD patients depending on type. (Exondys 51) for exon 51 skipping was conditionally approved by the FDA in 2016 based on minimal increases (0.9% of normal), despite lacking robust clinical efficacy evidence; subsequent drugs like golodirsen and viltolarsen (for exons 53 and 45, respectively) followed similar accelerated paths in 2019 and 2020, with viltolarsen showing stable ambulation in small cohorts over 180 weeks but no significant 6-minute walk test improvements. Long-term data indicate modest benefits in some models, but overall functional gains remain limited, prompting debates on whether surrogate endpoints justify approvals amid high costs ($300,000+ annually). Genome editing with -Cas systems offers potential for permanent correction by excising or skipping mutated exons directly in patient cells. As of May 2025, no therapies for muscular dystrophy have advanced to late-stage trials, though preclinical studies demonstrate efficient restoration in DMD mouse models with minimal off-target effects using Cas9 or Cas12a nucleases. HuidaGene's HG302, a -Cas12-based exon-skipping , initiated dosing in its phase 1 MUSCLE trial in December 2024, targeting ambulatory DMD boys with early data from ASGCT 2025 suggesting improved expression and motor function. Delivery challenges persist, including AAV immunogenicity and scalability for systemic muscle targeting, with ongoing research at centers like the Center exploring optimized vectors. For rarer dystrophies like limb-girdle, experimental AAV (e.g., Sarepta's SRP-9004 for LGMD type 2D) increased missing protein levels in phase 1 trials as of October 2025, with regulatory submissions planned. These approaches underscore causal links between restoration and slowed progression but require rigorous validation against placebo-controlled outcomes to confirm disease-modifying effects.

Controversies and Critical Evaluations

Debates on Treatment Efficacy and Approvals

The approval of (Exondys 51) by the U.S. () on September 19, 2016, marked the first therapy for (), granted via accelerated approval based on a of increased production observed in a small open-label study involving 12 boys. Critics, including the 's own advisory committee which voted 7-3 against approval citing insufficient evidence of clinical benefit, argued that the surrogate did not reliably predict improvements in muscle function, ambulation, or survival, with increases deemed minimal (0.93% of normal levels). The () rejected in 2018, emphasizing the lack of robust phase III data demonstrating meaningful functional outcomes. Subsequent exon-skipping therapies from , such as golodirsen (Vyondys 53) approved in December 2019 and viltolarsen (Viltepso) in August 2020, followed similar accelerated pathways relying on surrogates from studies of 25 or fewer patients, without placebo-controlled evidence of slowed disease progression. assessments, including a 2019 Institute for Clinical and Economic Review (ICER) report, found no high-quality evidence of clinical benefits for three years post-approval, highlighting risks of over-reliance on unvalidated biomarkers amid annual costs exceeding $300,000 per patient. A 2024 analysis in noted that U.S. spending on these targeted DMD therapies reached billions despite limited efficacy data, prompting calls for stricter confirmatory trial requirements to verify functional gains like six-minute walk test improvements. Gene-based therapies have intensified debates, exemplified by Sarepta's delandistrogene moxeparvovec (Elevidys), initially granted accelerated approval in June 2023 for children aged 4-5 with DMD mutations amenable to 2 , based on micro-dystrophin expression rather than clinical endpoints. Traditional approval was extended in 2024 to non- patients despite phase III trial failures to meet primary endpoints for motor function, with critics questioning the FDA's decision to prioritize surrogate data over outcomes like North Star Assessment scores showing no significant differences. Safety concerns escalated in 2025 following reports linking Elevidys to and deaths in two teenage trial participants, underscoring risks of immune responses to vectors without proportional efficacy gains. Broader critiques target the FDA's accelerated approval framework for rare diseases, where DMD drugs have been greenlit on biomarkers uncorrelated with lifespan extension—DMD patients typically survive into their 20s-30s with supportive care—while confirmatory studies lag or underperform. Proponents, including groups, defend approvals as providing early access in a field lacking curative options, yet empirical from long-term registries indicate minimal shifts in ventilation-free survival or wheelchair dependency rates attributable to these interventions. As of 2025, regulatory experts advocate reforms mandating adaptive trial designs and to innovation against unsubstantiated claims, amid Sarepta's discontinuation of riskier candidates like SRP-5051 due to renal toxicities and unproven benefits.

Ethical and Risk Considerations in Research

Research into muscular dystrophy, particularly (DMD), involves ethical challenges stemming from the disease's progressive and fatal nature, which creates pressure for rapid development of innovative therapies despite limited preliminary data. Studies of experimental treatments, such as gene therapies using (AAV) vectors, must balance potential benefits against substantial risks, including immune-mediated adverse events that have led to patient deaths. For instance, two fatalities in DMD gene therapy trials were attributed to complement activation and cytokine release triggered by high-dose AAV administration, highlighting the need for rigorous preclinical modeling. A primary risk in these trials is acute immune reactions, such as (ARDS) from innate immune responses or , as observed in phase 1/2 studies where participants experienced of heart tissue. Long-term uncertainties include off-target genetic effects and potential oncogenic risks from viral vectors, which remain uncharacterized due to the novelty of these interventions. and surveys indicate tolerance for elevated mortality risks—up to 10-20% in some cases—for non-curative gene therapies that might delay progression, reflecting desperation amid absent disease-modifying options. However, ethicists argue that such risk thresholds demand enhanced oversight to prevent undue influence from therapeutic misconception, where participants overestimate benefits based on preclinical hype. Informed consent poses unique hurdles in pediatric DMD research, as trials predominantly enroll young boys incapable of full legal consent, relying on parental decisions amid emotional distress and cognitive impairments from the disease. Parents often weigh burdens, trial eligibility conflicts, and hopes for altruism, yet studies show underappreciation of risks or , complicating true voluntariness. Ethical frameworks emphasize assent from capable children and ongoing re-consent, but neuromuscular progression can erode capacity over time, raising questions about mid-trial withdrawal rights. Controversies illustrate tensions between regulatory flexibility and evidence standards, as seen in the 2016 FDA accelerated approval of , an exon-skipping therapy for DMD, despite advisory committee rejection for insufficient efficacy data beyond surrogate biomarkers like production. Critics contended this set a prioritizing over randomized controlled trial rigor, potentially exposing patients to high costs (over $300,000 annually) for marginal gains unverified in confirmatory studies delayed until at least 2024. Such decisions underscore the ethical imperative for transparent post-approval monitoring and avoidance of commercial pressures that may inflate perceived benefits in contexts.

Prognosis, Epidemiology, and Impact

Survival and Quality of Life Outcomes

Survival outcomes in muscular dystrophy vary significantly by subtype, with (DMD) exhibiting the most severe prognosis historically, though recent advances in respiratory support and corticosteroids have extended median to over 30 years in many cohorts. A 2021 analysis of studies reported a median life expectancy of 28.1 years for individuals with DMD born in 1990 or later, reflecting improvements from earlier eras where rarely exceeded the early 20s. In an spanning 50 years, curves demonstrated progressive gains, aligning with pooled analyses but highlighting regional variations in care access. Cardiac and respiratory complications remain primary causes of death, mitigated by proactive interventions like , which can push into the 40s for some. Becker muscular dystrophy (BMD), a milder allelic variant of DMD, generally permits survival into mid-to-late adulthood, with many individuals reaching their 40s or beyond before succumbing primarily to . Unlike DMD, wheelchair dependence in BMD occurs later, often in the 30s or 40s, contributing to extended lifespans without the same urgency for ventilatory support. (FSHD) and other less progressive forms, such as limb-girdle muscular dystrophy, typically do not shorten overall , with most affected individuals experiencing normal spans despite variable mobility loss. Approximately 20% of FSHD cases may require wheelchairs, but respiratory or cardiac failure is rare. Quality of life (QoL) in muscular dystrophy is predominantly impaired by progressive , loss of , , and , with greater disease severity correlating to lower health-related QoL scores across subtypes. In DMD, boys and young men report satisfactory overall QoL despite ambulatory decline, though family burden and psychological strain intensify with illness duration. Adults with various MD types emphasize needs for better , mitigation, and preserved autonomy to enhance wellbeing, as and social participation often lag behind physical metrics in standard assessments. Supportive measures like orthoses and multidisciplinary care can sustain functional participation, but longitudinal data underscore that unaddressed respiratory and cardiac issues erode QoL more than mobility alone. Emerging patient-reported tools, such as the DMD-QoL instrument, highlight subjective domains like emotional resilience, which vary independently of survival metrics.

Global Prevalence and Demographic Patterns

Muscular dystrophies collectively affect an estimated 3.6 individuals per 100,000 people worldwide, though this figure encompasses diverse subtypes with varying rarity. (DMD), the most prevalent form, exhibits a pooled global of 7.1 cases per 100,000 males and 2.8 cases per 100,000 in the general , reflecting its pattern that predominantly impacts males. (BMD), a milder allelic variant, occurs at approximately 1.6 cases per 100,000 males globally. Incidence rates for DMD specifically range from 1 in 3,500 to 1 in 5,000 male live births, with cumulative incidence estimates around 19.7 per 100,000 male births in recent analyses. Demographic patterns reveal strong sex disparities for X-linked forms like DMD and BMD, which almost exclusively affect males, while female carriers may exhibit mild symptoms but rarely full disease manifestation. Autosomal dominant subtypes, such as , impact both sexes more evenly, with around 1 in 8,000 individuals in certain populations. Age of onset varies by type: DMD symptoms typically emerge by age 2–5 years, progressing rapidly, whereas BMD onset often occurs in or early adulthood. Geographic distribution appears relatively uniform due to genetic etiology, though underdiagnosis prevails in low-resource regions with limited access to , potentially skewing reported prevalences lower in developing countries. Ethnic variations exist, with U.S. data indicating lower DMD prevalence among non-Hispanic Black males compared to , possibly attributable to differences in ascertainment or genetic factors, though global studies show no consistent racial disparities. Overall, muscular dystrophies remain rare, with total affected individuals exceeding 300,000 for DMD alone worldwide, underscoring the need for improved in underrepresented areas to refine epidemiological estimates.

Historical Context

Early Observations and Naming

The earliest clinical descriptions of what is now recognized as muscular dystrophy appeared in the early , with Scottish anatomist reporting cases of in boys in 1830, noting symmetric weakness beginning in the lower limbs and leading to in calves. Italian physician Gaetano Conte provided one of the first detailed accounts in 1836, describing a familial pattern of muscle wasting and weakness in young males that progressed relentlessly, distinguishing it from neural disorders. These observations preceded formal neuropathological studies, relying on clinical examination and family histories to infer a primary muscular rather than spinal cord involvement. British physician Edward Meryon advanced understanding in 1851 by publishing observations on "pseudohypertrophic muscular paralysis," documenting autopsy findings of fatty degeneration in muscles without neural damage, and emphasizing inheritance patterns in affected siblings. neurologist Guillaume Benjamin Amand Duchenne further characterized the condition in the 1860s through systematic clinical and histopathological studies, describing waddling , Gowers' (using hands to rise from the floor), and calf enlargement due to fat replacement of muscle fibers, which he termed "paralysie musculaire pseudohypertrophique." Duchenne's 1868 monograph solidified these features as hallmarks of the most severe form, later named , based on his microscopic evidence of muscle fiber degeneration independent of nerve pathology. The unifying term "muscular dystrophy" emerged later in the century amid recognition of varied forms. German neurologist Wilhelm Erb coined "Dystrophia muscularis progressiva" in 1884 to describe a spectrum of hereditary, progressive muscle disorders with and limb-girdle involvement, differentiating them from neurogenic atrophies. This nomenclature, emphasizing faulty muscle nutrition (from "dys" for faulty and "trophia" for nourishment), reflected emerging views of intrinsic muscle defects, though early observers like Erb and British neurologist William Gowers noted phenotypic variability, including milder adult-onset cases, without genetic mechanisms yet identified. These foundational reports, drawn from case series rather than large cohorts, laid the groundwork for classifying muscular dystrophies as distinct from other paralyses, prioritizing empirical and pedigree data over speculative etiologies.

Milestone Discoveries and Advances

The clinical recognition of muscular dystrophy as a distinct entity emerged in the mid-19th century, with early reports of progressive and . In , French neurologist Guillaume Benjamin Amand Duchenne published initial observations of boys exhibiting symmetrical muscle wasting starting in the lower limbs, progressing to loss of ambulation by , and eventual respiratory and cardiac complications; by 1868, he had documented 13 such cases in detail, distinguishing the condition from neural disorders through postmortem muscle showing fatty degeneration rather than neurogenic . Genetic investigations accelerated in the , confirming patterns for (DMD), the most prevalent form affecting approximately 1 in 3,500-5,000 male births. The DMD gene locus was mapped to the short arm of the (Xp21) in 1986 via linkage analysis in families, enabling carrier detection. In 1987, Kunkel and colleagues cloned the DMD gene, revealing it as the largest human gene spanning 2.2 megabases with 79 exons, and identified its protein product, , a 427-kDa cytoskeletal protein essential for muscle membrane stability; biopsies from DMD patients showed near-total absence, while milder featured truncated but partially functional . These molecular insights spurred foundational advances, including the 1984 development of the mdx mouse model harboring a in the murine dystrophin homolog, recapitulating DMD for preclinical testing without human ethical constraints. By the early , restoration strategies emerged, such as minigene delivery via viral vectors, though challenges like immune responses and limited efficiency persisted; this era also validated corticosteroids like , which in randomized trials extended ambulation by 2-3 years and improved pulmonary function by modulating and , marking the shift from purely supportive care to disease-modifying interventions.

Ongoing Research and Challenges

Current Clinical Trials and Innovations

As of October 2025, remains the most prominent innovation in muscular dystrophy treatment, particularly for (DMD), with (AAV) vectors delivering microdystrophin transgenes to address gene mutations. Sarepta's Elevidys (delandistrogene moxeparvovec-rokl), approved by the FDA in June 2023 for boys aged 4-5 with DMD, continues in and confirmatory studies to verify long-term efficacy beyond surrogate biomarkers like microdystrophin expression. Pfizer's fordadistrogene movaparvovec (PF-06939926), another AAV-microdystrophin candidate, is under evaluation in phase 3 trials despite prior safety concerns, with ongoing assessments of motor function endpoints. Several DMD trials emphasize novel delivery or approaches. Biosciences' SGT-003, an AAV9-based therapy, is in a multicenter open-label 1/2 (NCT06138639) assessing , tolerability, and via single intravenous infusion in boys aged 4-7, focusing on production and functional outcomes. Capricor Therapeutics' deramiocel (CAP-1002), a targeting DMD-associated , completed its phase 3 HOPE-3 , with topline data expected in mid-Q4 2025 to support regulatory submission; the FDA aligned on cardiac endpoints like left ventricular . Innovations like the of Rochester's "StitchR" method, reported in November 2024, enable split-gene delivery to overcome AAV packaging limits for larger constructs, potentially broadening applicability to other dystrophies. For (FSHD), trials target DUX4 gene derepression. Fulcrum Therapeutics' losmapimod, a p38 , advanced through phase 2/3 ReDUX trial readouts in 2024, showing modest reductions in DUX4-driven muscle damage, with phase 3 data anticipated to inform efficacy in facial and weakness. Collaborative efforts, including SOLVE FSHD and Modalis Therapeutics' CRISPR-based epigenome editing platform, aim to silence aberrant DUX4 expression, with preclinical advancements reported in 2025 toward clinical translation. In type 1 (DM1), antisense therapies dominate. Dyne Therapeutics' DYNE-101 (zeleciment basivarsen), an intramuscular force-conjugated candidate, demonstrated robust symptom reduction and functional improvements in the phase 1/2 ACHIEVE trial at one-year follow-up in October 2025, earning FDA Designation in June 2025 for splicing modulation in DMPK-expanded repeats. Sanofi's SAR446268, an anti-DUX4 , received FDA Fast Track Designation in September 2025, with phase 1 enrollment planned for late 2025 to evaluate safety in DM1-related muscle pathology. ' VX-670 is in a long-term extension study (NCT06926621) monitoring safety and in DM1 patients post-initial dosing.
TrialTypeSponsorStatus (as of Oct 2025)Key Focus
SGT-003 (NCT06138639)Solid BiosciencesPhase 1/2, recruitingAAV9 microdystrophin IV infusion safety/efficacy
HOPE-3CapricorPhase 3, completedDeramiocel for endpoints
ACHIEVE (DYNE-101)DM1 Dyne TherapeuticsPhase 1/2, ongoingSplicing correction, functional outcomes
ReDUX (losmapimod)FSHD inhibitorFulcrumPhase 3, data pendingp38 inhibition of DUX4 expression
These efforts, tracked by organizations like the and Parent Project Muscular Dystrophy, underscore a shift toward mutation-specific interventions, though long-term durability and immune responses remain unproven in large cohorts.

Barriers to Progress and Realistic Expectations

Progress in treating muscular dystrophies, particularly (DMD), faces substantial biological hurdles rooted in the underlying genetic defects. The gene, spanning 2.2 megabases and encoding the largest known human protein, exceeds the packaging capacity of (AAV) vectors commonly used for , necessitating truncated micro- or mini-dystrophin constructs that may not fully restore function. Body-wide muscle targeting remains challenging due to the systemic nature of skeletal, cardiac, and respiratory muscle involvement, with current AAV delivery methods achieving incomplete and waning expression over time. Immune-mediated barriers further complicate therapeutic efficacy. Patients lacking dystrophin often develop immune tolerance issues, treating restored dystrophin as a neo-antigen, which triggers T-cell and responses that degrade transgene expression and cause , as evidenced in post-treatment analyses of therapies like delandistrogene moxeparvovec (Elevidys). The pathological inflammatory milieu in dystrophic muscles exacerbates this, potentially amplifying vector and hindering long-term integration. Pre-existing antibodies to AAV capsids in up to 50% of patients also limit eligibility for systemic delivery. Logistical and trial-related obstacles impede advancement. Underrepresentation in clinical trials, such as among / families facing , access, and mistrust barriers, skews data and generalizability, with studies reporting lower enrollment rates despite DMD's in diverse populations. High trial failure rates, driven by surrogate endpoints like micro-dystrophin levels not correlating reliably with functional outcomes, contribute to regulatory scrutiny and stalled approvals. Realistic expectations temper optimism amid these constraints. Approved gene therapies like Elevidys provide modest benefits in early-stage DMD but fail to halt progression or the disease, with long-term showing immune attenuation of effects within 1-2 years. Broader muscular dystrophy subtypes remain underserved, with most interventions symptom-focused—corticosteroids extending ambulation by 2-3 years but accelerating comorbidities like and —rather than disease-modifying. Incremental gains, such as improved cardiac management prolonging median survival to 30 years in treated DMD cohorts, are achievable, but transformative s await breakthroughs in immune evasion, vector engineering, and scalable exon-skipping, likely decades away given historical attrition rates exceeding 90%.

References

  1. [1]
    Muscular Dystrophy | National Institute of Neurological Disorders ...
    Dec 19, 2024 · Muscular dystrophy (MD) refers to a group of genetic diseases that cause progressive weakness and degeneration of skeletal muscles.
  2. [2]
    The Muscular Dystrophies - PMC - NIH
    Muscular dystrophies are genetic, progressive, degenerative disorders with the primary symptom of muscle weakness.
  3. [3]
    Muscular Dystrophy - StatPearls - NCBI Bookshelf - NIH
    Feb 26, 2024 · The root cause of muscular dystrophy lies in mutations affecting genes responsible for muscle structure and function, leading to the gradual ...Etiology · Epidemiology · History and Physical · Differential Diagnosis
  4. [4]
    Types of Muscular Dystrophy - CDC
    Jan 7, 2025 · There are many types of muscular dystrophy: Duchenne (DMD), Becker (BMD), Myotonic (DM), Limb-Girdle (LGMD), Facioscapulohumeral (FSHD), ...
  5. [5]
    Duchenne Muscular Dystrophy - StatPearls - NCBI Bookshelf
    Duchenne muscular dystrophy (DMD) is one of the most severe forms of inherited muscular dystrophies. It is the most common hereditary neuromuscular disease.Duchenne Muscular Dystrophy · History And Physical · Treatment / Management<|separator|>
  6. [6]
    Duchenne muscular dystrophy and dystrophin - EMBO Press
    Duchenne muscular dystrophy (DMD) is caused by mutations in the gene that encodes the 427‐kDa cytoskeletal protein dystrophin.
  7. [7]
    Data Summary: Muscular Dystrophy - CDC
    Jan 7, 2025 · Prevalence of DBMD. About 1 in every 5,000 males aged 5-9 years1; Lower among non-Hispanic blacks than non-Hispanic whites 12 · Survival of males ...
  8. [8]
    Global prevalence of Duchenne and Becker muscular dystrophy - NIH
    Feb 15, 2022 · The global prevalence of muscular dystrophy was estimated at 3.6 per 100,000 people (95 CI 2.8–4.5 per 100,000 people), the largest prevalence ...
  9. [9]
    Current and emerging treatment strategies for Duchenne muscular ...
    There is presently no cure for DMD. Current treatment strategies focus on optimizing growth and development, promoting well-balanced diet, participating in ...
  10. [10]
    New Gene Therapy for Duchenne Muscular Dystrophy
    Oct 23, 2024 · A trial showed statistically significant improvement in the expression of dystrophin and improvement in motor function in 4- and 5-year-olds, ...Missing: prognosis | Show results with:prognosis
  11. [11]
    Muscular dystrophy - Symptoms & causes - Mayo Clinic
    May 17, 2025 · Muscular dystrophy is a group of diseases that causes muscles to become weaker and lose mass over time.
  12. [12]
    About Muscular Dystrophy - CDC
    Jan 7, 2025 · Muscular dystrophies are a group of genetic diseases in which muscles become weak. Over time, muscle weakness decreases mobility, making everyday tasks ...
  13. [13]
    Genetic Patterns of Selected Muscular Dystrophies in ... - Neurology
    Nov 17, 2023 · The possibility of digenic Mendelian inheritance as an explanation for some genetically unsolved cases of muscular dystrophy has been raised. In ...
  14. [14]
    A Review of Muscular Dystrophies - PMC - NIH
    May 3, 2024 · Muscular dystrophy is categorized based on the extent and distribution of weakness, age at onset, progression, symptom severity, and genealogy.Missing: classification | Show results with:classification
  15. [15]
    Muscular dystrophy - Diagnosis & treatment - Mayo Clinic
    May 17, 2025 · Find out about the various types of this condition, which affects muscles over time. Then learn about treatments to help with the symptoms.Diagnosis · Treatment · Preparing For Your...<|separator|>
  16. [16]
    Global prevalence of Duchenne and Becker muscular dystrophy
    Feb 15, 2022 · Muscular dystrophies are inherited, heterogeneous group of disorders caused by mutations in a number of genes that encode proteins involved in ...
  17. [17]
    Duchenne Muscular Dystrophy (DMD) - Diseases
    Muscle weakness is the principal symptom of DMD. It can begin as early as age 2 or 3, first affecting the proximal muscles (those close to the torso) and later ...Signs and Symptoms · Causes/Inheritance · Becker muscular dystroph · Diagnosis<|separator|>
  18. [18]
    Duchenne Muscular Dystrophy (DMD): What It Is & Symptoms
    Duchenne muscular dystrophy (DMD) is a condition that causes skeletal and heart muscle weakness that quickly gets worse with time. It mainly affects boys.
  19. [19]
    Becker Muscular Dystrophy - StatPearls - NCBI Bookshelf
    Jan 30, 2024 · Becker muscular dystrophy (BMD) is an X-linked recessive disorder involving dystrophin gene mutation, resulting in progressive muscle degeneration.
  20. [20]
    Becker Muscular Dystrophy (BMD) - Diseases
    Becker muscular dystrophy affects the muscles of the hips, pelvic area, thighs, and shoulders, as well as the heart. Becker muscular dystrophy (BMD) is one ...Signs and Symptoms · Causes/Inheritance · Medical Management · Diagnosis
  21. [21]
    Becker Muscular Dystrophy (BMD): Symptoms & Treatment
    Jul 25, 2022 · Becker muscular dystrophy (BMD) is a rare, inherited condition that results in progressive muscle degeneration. It mainly affects males.
  22. [22]
    Myotonic Dystrophy - StatPearls - NCBI Bookshelf - NIH
    Jun 26, 2023 · DM1 is classically divided into three types: (1) congenital, (2) mild, and (3) classic. There is an additional subtype that typically presents ...
  23. [23]
    Types of Myotonic Dystrophy (DM) - Diseases
    DM1 and DM2 — both caused by genetic defects. They result in multisystem disorders characterized by skeletal ...
  24. [24]
    Myotonic Dystrophy: What It Is, Symptoms, Types & Treatment
    Dec 12, 2022 · Myotonic dystrophy (DM) is an inherited condition that mainly causes progressive muscle loss, weakness and myotonia.
  25. [25]
    Myotonic dystrophy: MedlinePlus Genetics
    Jul 1, 2020 · There are two variations of myotonic dystrophy type 1: the mild and congenital types. Mild myotonic dystrophy is apparent in mid to late ...
  26. [26]
    Facioscapulohumeral Muscular Dystrophy - StatPearls - NCBI - NIH
    Facioscapulohumeral muscular dystrophy is a genetically acquired disease that leads to progressive muscle weakness and severely decreased functional capacity.
  27. [27]
    Facioscapulohumeral Muscular Dystrophy (FSH, FSHD) - Diseases
    Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades, and upper arms are among the most ...Signs and Symptoms · Medical Management · Causes/Inheritance · Diagnosis
  28. [28]
    Facioscapulohumeral Muscular Dystrophy - GeneReviews - NCBI
    Jul 10, 2025 · Facioscapulohumeral muscular dystrophy (FSHD) typically presents with weakness of the facial muscles, the stabilizers of the scapula, and/or the dorsiflexors ...
  29. [29]
    Limb–Girdle Muscular Dystrophies Classification and Therapies - NIH
    Jul 19, 2023 · Limb–girdle muscular dystrophies (LGMDs) are caused by mutations in multiple genes. This review article presents 39 genes associated with LGMDs.
  30. [30]
    Limb-Girdle Muscular Dystrophy (LGMD) - Diseases
    There are two major groups of LGMDs. Traditionally called LGMD1 and LGMD2, these two groups are classified by the respective inheritance patterns: autosomal ...Signs and Symptoms · Causes/Inheritance · Medical Management · Diagnosis
  31. [31]
    Limb-Girdle Muscular Dystrophy (LGMD) - Cleveland Clinic
    Dec 12, 2023 · The most common subtype of limb-girdle muscular dystrophy in the U.S. is LGMD R1 calpain3-related (calpainopathy). It accounts for 12% to 30% of ...
  32. [32]
    Causes/Inheritance - Duchenne Muscular Dystrophy (DMD)
    Researchers identified a gene on the X chromosome that, when flawed (mutated), causes Duchenne, Becker, and intermediate forms of muscular dystrophy.
  33. [33]
    Duchenne and Becker muscular dystrophy - Genetics - MedlinePlus
    Nov 1, 2016 · Muscular dystrophies are a group of genetic conditions characterized by progressive muscle weakness and wasting (atrophy).
  34. [34]
    Myotonic Dystrophy Type 1 - GeneReviews® - NCBI Bookshelf
    DM1 is inherited in an autosomal dominant manner. Offspring of an affected individual have a 50% chance of inheriting the expanded allele. Pathogenic alleles ...Summary · Diagnosis · Differential Diagnosis · Genetic Counseling
  35. [35]
    Causes/Inheritance - Myotonic Dystrophy (DM) - Diseases
    Both DM1 and DM2 are inherited in an autosomal dominant pattern, meaning it takes only one flawed allele, one copy carrying the abnormal expansion, to cause ...
  36. [36]
    DUX4 Signalling in the Pathogenesis of Facioscapulohumeral ...
    Jan 22, 2020 · There is a consensus that FSHD is caused by the aberrant production of the double homeobox protein 4 (DUX4) transcription factor in skeletal muscle.
  37. [37]
    Genetic Cause - FSHD Society
    FSHD is caused by ectopic expression of the germline transcription factor DUX4 gene in muscle cells. FSHD1 is associated with the deletion of a chromosomal ...
  38. [38]
    Causes/Inheritance - Limb-Girdle Muscular Dystrophy (LGMD)
    LGMD can be inherited in one of two basic ways that are known as the autosomal dominant pattern and the autosomal recessive pattern.
  39. [39]
    Limb-girdle muscular dystrophy: MedlinePlus Genetics
    Sep 1, 2019 · Learn more about the genes associated with Limb-girdle muscular dystrophy · ANO5 · CAPN3 · CAV3 · COL6A1 · COL6A2 · COL6A3 · CRPPA · DYSF ...
  40. [40]
    Cellular and molecular mechanisms underlying muscular dystrophy
    May 13, 2013 · The muscular dystrophies are a group of heterogeneous genetic diseases characterized by progressive degeneration and weakness of skeletal muscle.
  41. [41]
    The role of the dystrophin glycoprotein complex in muscle cell ...
    Sep 27, 2022 · Dystrophin connects the actin cytoskeleton to the extracellular matrix (ECM). Severing the link between the ECM and the intracellular ...
  42. [42]
    Dystrophin-glycoprotein complex: its role in the molecular ... - PubMed
    Dystrophin, the protein product of the Duchenne muscular dystrophy (DMD) gene, is associated with a large oligomeric complex of sarcolemmal glycoproteins.
  43. [43]
    Duchenne and Becker muscular dystrophy: Cellular mechanisms ...
    Jan 15, 2024 · The aim of this review is to describe DMD and Becker muscular dystrophy in terms of cellular behavior and molecular disorders and to present an overview of the ...Abstract · MUSCLE MORPHOLOGY... · DUCHENNE AND BECKER...
  44. [44]
    Cellular pathophysiology of Duchenne muscular dystrophy - Nature
    Dec 7, 2024 · DMD is a fatal X-linked disorder caused by loss-of-function mutations in the DMD gene, leading to the absence of dystrophin and progressive ...
  45. [45]
    Cellular pathogenesis of Duchenne muscular dystrophy
    This review outlines the complexity of dystrophinopathy and describes the importance of the pathophysiological role of satellite cell dysfunction.
  46. [46]
    Molecular and cellular basis of calpainopathy (limb girdle muscular ...
    Most autosomal recessive limb girdle muscular dystrophies (LGMD) are due to mutations in genes encoding structural proteins that make up the cytoskeletal ...
  47. [47]
    The ties that bind: functional clusters in limb-girdle muscular dystrophy
    Jul 29, 2020 · We believe that three major “functional clusters” of subcellular activities relevant to LGMD merit further investigation.
  48. [48]
    DUX4-induced dsRNA and MYC mRNA stabilization activate ...
    Mar 8, 2017 · We found that DUX4 activated a known MYC-induced cell death pathway, at least in part through stabilization of MYC mRNA.
  49. [49]
    A feedback loop between nonsense-mediated decay and the ... - eLife
    Jan 7, 2015 · Expression of the disease gene DUX4 inhibits RNA quality control in skeletal muscle, thereby stabilizing thousands of aberrant RNAs, ...
  50. [50]
    Muscular Dystrophy: What It Is, Symptoms, Types & Treatment
    There are more than 30 types of muscular dystrophy. Some of the more common forms include: Duchenne muscular dystrophy (DMD): This is the most common form of ...Duchenne Muscular Dystrophy · Becker muscular dystrophy · Myotonia
  51. [51]
    Detecting early signs in Duchenne muscular dystrophy - NIH
    Nov 10, 2023 · Delayed walking, Toe walking ; Difficulty rising from the floor, Frequent trips, falls, or clumsiness ; Gower's sign on rising from the floor ...
  52. [52]
    Duchenne muscular dystrophy: MedlinePlus Medical Encyclopedia
    Dec 31, 2023 · Symptoms · Begins in the legs and pelvis, but also occurs less severely in the arms, neck, and other areas of the body. · Problems with motor ...
  53. [53]
    Signs and Symptoms of Becker Muscular Dystrophy (BMD) - Diseases
    Signs and Symptoms. The pattern of muscle loss in BMD usually begins with the hips and pelvic area, the thighs, and the shoulders.
  54. [54]
    [PDF] Becker Muscular Dystrophy (BMD) Fact Sheet
    Becker muscular dystrophy (BMD) is a genetic disorder characterized by progressive weakness and degeneration of the skeletal muscles that control movement. ...
  55. [55]
    Muscular Dystrophy | Johns Hopkins Medicine
    Symptoms of muscular dystrophy · Clumsiness · Problems climbing stairs · Trouble jumping or hopping · Frequent tripping or falling · Walking on their toes · Leg pain.
  56. [56]
    Occurrence of symptoms in different stages of Duchenne muscular ...
    The most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia ( ...
  57. [57]
    Duchenne muscular dystrophy | Nature Reviews Disease Primers
    Feb 18, 2021 · Neurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutations.
  58. [58]
    The natural history of the patients with Duchenne muscular ...
    Aug 25, 2017 · In addition to progressive proximal muscle weakness, respiratory, orthopedic, and gastrointestinal complications are often observed in DMD.
  59. [59]
    Diagnosis and management of Duchenne muscular dystrophy, part 1
    Specialised functional assessment includes analysis of patterns of movement and standardised assessments specific to DMD and other neuromuscular disorders. The ...
  60. [60]
    Diagnosis - Duchenne Muscular Dystrophy (DMD) - Diseases
    Diagnosis is confirmed if a mutation in the DMD gene is identified. The genetic analysis is first directed to find large deletion/duplication mutations (70% to ...
  61. [61]
    Genetic diagnosis of Duchenne and Becker muscular dystrophy ...
    Dec 19, 2022 · Up to 7% of patients with Duchenne muscular dystrophy (DMD) or Becker muscular dystrophy (BMD) remain genetically undiagnosed after routine ...Patients · Deep Intronic Variants And... · Figure 1<|separator|>
  62. [62]
    DBMD - Overview: Duchenne/Becker Muscular Dystrophy, DMD ...
    Feb 2, 2025 · If chorionic villus specimen (nonconfluent cultured cells) is received, fibroblast culture for genetic test will be added and charged separately ...
  63. [63]
    How is muscular dystrophy (MD) diagnosed? | NICHD
    Nov 9, 2020 · Healthcare providers usually do several tests, such as genetic, blood, and muscle tests, to diagnose MD and identify the type.
  64. [64]
    Muscular Dystrophy Differential Diagnoses - Medscape Reference
    Mar 22, 2024 · Differential Diagnoses · Becker Muscular Dystrophy · Congenital Muscular Dystrophy · Emery-Dreifuss Muscular Dystrophy · Limb-Girdle Muscular ...Missing: peer | Show results with:peer
  65. [65]
    Diagnosis and management of Duchenne muscular dystrophy, part 2
    Jun 16, 2025 · We present the latest recommendations for respiratory, cardiac, bone health and osteoporosis, and orthopaedic and surgical management for boys and men with DMD.
  66. [66]
    Current Concepts in the Orthopaedic Management of Duchenne ...
    Jul 10, 2024 · Current orthopaedic management strategies emphasize early intervention with corticosteroids to delay disease progression and the use of surgical spinal fusion.
  67. [67]
    Respiratory Management of the Patient With Duchenne Muscular ...
    Oct 1, 2018 · A progressive therapeutic strategy is presented that includes lung volume recruitment, assisted coughing, and assisted ventilation.Objectives · Ambulatory Stage · Use of Respiratory Devices...
  68. [68]
    Assessment and management of respiratory function in patients with ...
    The onset or chronic respiratory insufficiency is a fatal inevitable complication of DMD. Patients not treated with mechanical ventilation die by the end of the ...
  69. [69]
    Respiratory Management of Patients With Neuromuscular Weakness
    Mar 13, 2023 · This CHEST guideline examines the literature on the respiratory management of patients with NMD to provide evidence-based recommendations.
  70. [70]
    [PDF] Maintaining Pulmonary Function With Duchenne Muscular Dystrophy
    Good nutrition helps maintain an ideal body weight, which is key to long-term DMD management. Being underweight or overweight are both harmful to respiratory ...
  71. [71]
    [PDF] Rehabilitation Standards of Care for Duchenne Muscular Dystrophy
    Jun 2, 2018 · - Interventions require comprehensive team management, including physical therapy, postural correction, orthotic intervention and splinting, ...
  72. [72]
    Corticosteroids for the treatment of Duchenne muscular dystrophy
    May 5, 2016 · Moderate quality evidence from RCTs indicates that corticosteroid therapy in DMD improves muscle strength and function in the short term (twelve months), and ...
  73. [73]
    Efficacy and safety of deflazacort vs prednisone and placebo for ...
    This study provides Class I evidence that for boys with DMD, daily use of either DFZ and PRED is effective in preserving muscle strength over a 12-week period.
  74. [74]
    Standard of care versus new-wave corticosteroids in the treatment of ...
    Mar 4, 2021 · Deflazacort shows comparable efficacy to prednisone in DMD patients but has been associated with improved outcomes such as greater delay in ...
  75. [75]
    Duvyzat (givinostat): a new hope for Duchenne muscular dystrophy ...
    Mar 28, 2025 · The approval of Duvyzat (givinostat) by the Food and Drug Administration (FDA) marks a significant milestone in the treatment of Duchenne muscular dystrophy ( ...<|separator|>
  76. [76]
    Medical Management - Duchenne Muscular Dystrophy (DMD)
    The categories of medications for DMD include corticosteroids, gene therapy, exon skipping drugs, and therapies that promote growth and regeneration.
  77. [77]
    Approved Treatments for Muscular Dystrophy
    The FDA first approved Elevidys in June 2023, making it the first gene therapy for DMD to be authorized for commercial use. A label expansion one year later ...
  78. [78]
    The Effectiveness and Value of Deflazacort and Exon-Skipping ...
    Standard treatment for DMD includes supportive care, such as physical and occupational therapy to maintain ambulation, and medications such as corticosteroids.<|separator|>
  79. [79]
    An Updated Analysis of Exon-Skipping Applicability for Duchenne ...
    Nov 20, 2024 · The first FDA-approved ASO for the treatment of DMD, Eteplirsen, which induces the skipping of exon 51, received FDA approval in 2016 [66]. The ...
  80. [80]
    Evidence-based guideline summary: Evaluation, diagnosis, and ...
    There is at present no effective pharmacologic intervention in FSHD. Available studies suggest that scapular fixation is safe and effective. Surgical scapular ...
  81. [81]
    Facioscapulohumeral Dystrophy Medication - Medscape Reference
    May 2, 2024 · No drug therapy has been shown to impact the clinical course of facioscapulohumeral dystrophy (FSHD). Beta-blockers do not result in improvement of muscle ...
  82. [82]
    Therapeutic Strategy and Clinical Path of Facioscapulohumeral ...
    Sep 12, 2024 · As for molecule drugs, only one small molecule drug has entered clinical trials in Europe and America: losmapimod, an inhibitor of p38 signal, ...
  83. [83]
    Approved Therapies for Duchenne Muscular Dystrophy
    Approved Therapies for Duchenne Muscular Dystrophy. There are currently 8 FDA-approved therapies specific to Duchenne muscular dystrophy (DMD).Missing: pharmacological | Show results with:pharmacological
  84. [84]
    Research - Duchenne Muscular Dystrophy (DMD) - Diseases
    Efforts now focus on restoring dystrophin production, improving muscle regeneration, reducing inflammation and fibrosis, and protecting the heart and diaphragm.Missing: prognosis | Show results with:prognosis
  85. [85]
    Exon-Skipping in Duchenne Muscular Dystrophy - PMC - NIH
    Jun 24, 2021 · Exon skipping to therapeutically restore the frame of an out-of-frame dystrophin mutation has taken center stage in drug development for DMD.
  86. [86]
    ELEVIDYS - FDA
    Jun 25, 2025 · ELEVIDYS is an adeno-associated virus vector-based gene therapy indicated in individuals at least 4 years of age: For the treatment of Duchenne ...
  87. [87]
    Roche provides regulatory update on Elevidys™ gene therapy for ...
    Jul 25, 2025 · On 15 June, Roche announced new dosing restrictions for Elevidys for non-ambulatory DMD patients, irrespective of age, in both clinical and ...
  88. [88]
    FDA Informs Sarepta That It Recommends That ... - Investor Relations
    Jul 28, 2025 · The DMD indication in non-ambulatory patients is approved under accelerated approval based on expression of ELEVIDYS micro-dystrophin in ...
  89. [89]
    Data on Duchenne Muscular Dystrophy Treatment From MDA 2025
    Jun 16, 2025 · Data from MDA 2025 demonstrate that delandistrogene moxeparvovec (gene therapy for DMD) shows statistically significant improvements in motor function outcomes.Missing: experimental | Show results with:experimental
  90. [90]
    New Gene Therapies for Duchenne Muscular Dystrophy 2025
    Among the promising gene therapy candidates currently in development are Genethon GNT-0004, RegenxBio RGX-202, and Solid Biosciences SGT-003.
  91. [91]
    Safety and efficacy of viltolarsen in ambulatory and nonambulatory ...
    Oct 8, 2024 · It is estimated that 55% to 80% of DMD mutations are amenable to exon skipping, and approximately 8% to 10% of all mutations are amenable to ...<|control11|><|separator|>
  92. [92]
    Efficacy of exon-skipping therapy for DMD cardiomyopathy with ...
    Oct 18, 2023 · In conclusion, exon skipping therapy targeting ABD1 to convert the reading frame to Δ3–9 may be promising for treating DMD cardiomyopathy.
  93. [93]
    [PDF] a look at deflazacort and exon-skipping therapies for duchenne ...
    Measurement of effectiveness: The outcomes used in clinical trials may not fully characterize the effects of drug therapy, as there appears to be a gap between ...
  94. [94]
    Gene Editing for Duchenne Muscular Dystrophy - PubMed
    The CRISPR system has emerged as a ground-breaking gene-editing tool, offering promising therapeutic potential for Duchenne muscular dystrophy (DMD).
  95. [95]
    HuidaGene Therapeutics Initiates MUSCLE Clinical Trial of HG302 ...
    Dec 12, 2024 · The dosing of the first patient in its MUSCLE clinical trial evaluating HG302, a CRISPR-based DNA-editing therapy for Duchenne muscular dystrophy.
  96. [96]
    CRISPR-Cas12 Editing Shows Early Clinical Benefit in Duchenne ...
    May 8, 2025 · HG302 is a one-time single-cut CRISPR-Cas12 therapy that is designed to induce exon skipping and restore dystrophin expression with minimal off-target effects.
  97. [97]
    Developing a CRISPR therapy for muscular dystrophy
    Jan 7, 2025 · Researchers at the Experimental and Clinical Research Center in Berlin are developing a targeted treatment for muscular dystrophy with the help of gene-editing.
  98. [98]
    Sarepta to seek approval for gene therapy in rare muscular dystrophy
    Oct 10, 2025 · An experimental gene therapy from Sarepta Therapeutics increased levels of the gene missing in an ultra-rare form of muscular dystrophy, ...
  99. [99]
    Experimental treatments for muscular dystrophy
    SRP-9004 is an experimental gene therapy designed to improve walking ability and muscle strength in people with limb-girdle muscular dystrophy (LGMD) type 2D.
  100. [100]
    Sarepta Gets An Approval - Unfortunately | Science | AAAS
    Sep 20, 2016 · The FDA's own review team concluded that eteplirsen was not likely to show any real benefit, while Janet Woodcock, head of the whole Center for ...
  101. [101]
    Eteplirsen Is Approved in the United States but Was Not ... - PubMed
    Dec 11, 2018 · In this commentary, we outline how differences in the perspective of FDA and EMA can lead to a DMD therapy being approved by FDA but not EMA, and vice versa.
  102. [102]
    Spending on Targeted Therapies for Duchenne Muscular Dystrophy
    Mar 11, 2024 · Despite limited evidence of efficacy, these new Duchenne muscular dystrophy products are expensive. Eteplirsen can cost more than $1 million per ...
  103. [103]
    ICER Issues Final Report and Policy Recommendations Regarding ...
    Aug 15, 2019 · Three years after approval, the manufacturer has provided no high-quality evidence of benefit, many patients and families are surely losing out, ...Missing: criticism | Show results with:criticism
  104. [104]
    The FDA approval of delandistrogene moxeparvovec-rokl for ...
    The FDA approval of delandistrogene moxeparvovec-rokl for Duchenne muscular dystrophy: a critical examination of the evidence and regulatory processMissing: debates | Show results with:debates
  105. [105]
    Report: Failed Trials, Yet Full FDA Approval of a Duchenne ...
    Feb 26, 2025 · The Food and Drug Administration (FDA) approved a novel gene therapy for the rare but deadly childhood-onset disease Duchenne muscular dystrophy.<|separator|>
  106. [106]
    The deadly saga of the controversial gene therapy Elevidys
    Jul 25, 2025 · The drug, which was designed to treat Duchenne muscular dystrophy, has been linked to the deaths of two teenage boys.
  107. [107]
    A New Perspective on Drugs for Duchenne Muscular Dystrophy
    Dec 20, 2024 · New drugs for Duchenne muscular dystrophy (DMD) are emerging rapidly. However, we and others believe these drugs are achieving regulatory approval prematurely.
  108. [108]
    Dr Ben Rome Scrutinizes the FDA's Accelerated Approval Pathway ...
    Mar 15, 2024 · Benjamin N. Rome, MD, MPH, examined how the FDA's accelerated approval process has moved 5 genetically targeted treatments for Duchenne muscular dystrophy (DMD ...
  109. [109]
    Therapeutic options for Duchenne muscular dystrophy: hope or hype?
    Jun 21, 2025 · Unfortunately, these new DMD therapies are currently not approved in many countries outside of the EU, United Kingdom, or United States, in part ...
  110. [110]
    Sarepta Halts Development of Next-Gen DMD Drug, Reports Robust ...
    Nov 7, 2024 · Sarepta Therapeutics will discontinue development of vesleteplirsen, an exon 51-skipping therapy for Duchenne muscular dystrophy that was a potential successor ...
  111. [111]
    Risks in a Trial of an Innovative Treatment of Duchenne Muscular ...
    Studies of innovative therapies for muscular dystrophy raise unique ethical issues. The disease is currently untreatable and relentlessly progressive.
  112. [112]
    [How safe is gene therapy? : Second death after Duchenne therapy]
    May 15, 2024 · Two deaths following DMD gene therapy with high-dose AAV vectors were attributed to AAV-mediated immune responses.
  113. [113]
    Death after High-Dose rAAV9 Gene Therapy in a Patient with ...
    Sep 27, 2023 · These findings indicate that an innate immune reaction caused ARDS in a patient with advanced DMD treated with high-dose rAAV gene therapy.
  114. [114]
    Understanding Duchenne Gene Therapy Trials & Results Data
    Sep 27, 2022 · Three serious adverse events, including myocarditis or inflammation of the heart tissue, occurred in CIFFREO. Participants with certain genetic ...
  115. [115]
    Muscular Dystrophy | ASGCT - American Society of Gene & Cell ...
    Gene therapy can be an alteration for the lifetime, so people should be aware that there could be long term effects (both good or bad) that are not known at ...
  116. [116]
    Newly Published Study Evaluates Patients' and Caregivers ...
    Oct 17, 2025 · Study participants were asked to consider non-curative gene therapy options and to indicate the highest risk of death they would accept in ...
  117. [117]
    Re-evaluating Acceptable Risk of Death from Gene Therapy
    Oct 10, 2025 · No approved therapy has been proven to prevent loss of ambulation, respiratory failure, or cardiomyopathy [5]. There is an urgent need to ...
  118. [118]
    Decision making for Duchenne muscular dystrophy trials - PMC - NIH
    To enrich the informed consent process, clinician investigators and clinical trial sponsors benefit from an awareness of motivations to participate in trials ...
  119. [119]
    Barriers and facilitators to clinical trial participation among parents of ...
    The objective of this study was to explore factors associated with parental interest in enrolling children with pediatric neuromuscular disorders in clinical ...
  120. [120]
    Risks in a Trial of an Innovative Treatment of Duchenne Muscular ...
    Dec 1, 2015 · Studies of innovative therapies for muscular dystrophy raise unique ethical issues. The disease is currently untreatable and relentlessly ...
  121. [121]
    US government approves controversial drug for muscular dystrophy
    Sep 20, 2016 · Eteplirsen will be the first drug approved in the United States that targets the cause of Duchenne muscular dystrophy. Another drug, called ...
  122. [122]
    Duchenne Muscular Dystrophy Drug: Did FDA Make The Right Call?
    Sep 24, 2016 · The Food and Drug Administration approved a muscular dystrophy drug despite deeply flawed evidence. Was the decision a dangerous precedent ...Missing: ethical | Show results with:ethical
  123. [123]
    FDA's approval of Duchenne muscular dystrophy drug under scrutiny
    Aug 25, 2023 · The 2016 accelerated approval of eteplirsen (Exondys 51) for Duchenne muscular dystrophy has been called into question in a commentary ...
  124. [124]
    Duchenne muscular dystrophy: Evolving therapeutic strategies and ...
    According to a recent systematic review, the average life expectancy of patients with DMD is over 30 years, with an increasing number of long-term survivors ...
  125. [125]
    Life Expectancy in Duchenne Muscular Dystrophy - Healthline
    Sep 17, 2025 · One 2021 analysis of 14 previous studies found a median life expectancy of 28.1 years for people with DMD who were born in 1990 or later. For ...
  126. [126]
    Survival in Duchenne muscular dystrophy in Australia: a 50 year ...
    In this Australian cohort, survival increased over time. Our findings align to some extent with recent pooled survival analyses; however, life expectancy in ...
  127. [127]
    Muscular Dystrophy Prognosis - Rare Disease Advisor
    Jul 1, 2021 · On average, patients with BMD survive into their mid-40s. The most common cause of death is heart failure due to cardiomyopathy.6. Read more ...Missing: median | Show results with:median
  128. [128]
    Facioscapulohumeral Dystrophy - Medscape Reference
    May 2, 2024 · Most patients with FSHD have a normal life expectancy. Gender differences. Frequency of FSHD is higher in males; however, asymptomatic cases are ...
  129. [129]
    Measuring quality of life in muscular dystrophy - PMC
    Older age, longer illness duration, and greater disease severity are associated with lower perceived health-related quality of life (HRQOL) among individuals ...
  130. [130]
    The quality of life in boys with Duchenne muscular dystrophy
    Our results indicate that boys with Duchenne muscular dystrophy have quite a satisfactory quality of life. A happier and more hopeful life can be promoted ...
  131. [131]
    Decreased quality of life in Duchenne muscular disease patients ...
    Today, DMD patients live up to 30 or 40 years (6). It is well-known that DMD influences the QoL not only for patients, but also for their families (7–11).Introduction · Methods · Results · Discussion
  132. [132]
    Quality of life in adults with muscular dystrophy - PMC
    Jul 15, 2019 · A greater understanding of mental wellbeing, independence, and management of fatigue and pain, are required to improve QoL for adults with MD.
  133. [133]
    Outcome measures in muscular dystrophy rehabilitation: an ICF ...
    Jan 31, 2025 · The result is impaired functional capacity with a negative impact on personal autonomy, activity and participation, and overall quality of life, ...
  134. [134]
    Development of a New Quality of Life Measure for Duchenne ...
    The DMD-QoL is a new 14-item QoL PROM for boys and men with DMD, with demonstrable content and face validity.
  135. [135]
    Global epidemiology of Duchenne muscular dystrophy: an updated ...
    Jun 5, 2020 · The pooled global DMD prevalence was 7.1 cases (95% CI: 5.0–10.1) per 100,000 males and 2.8 cases (95% CI: 1.6–4.6) per 100,000 in the general ...
  136. [136]
    Duchenne Muscular Dystrophy - Symptoms, Causes, Treatment
    Learn about Duchenne Muscular Dystrophy, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to ...
  137. [137]
    Duchenne Muscular Dystrophy (DMD) | Sarepta Therapeutics
    Decode Duchenne provides free genetic testing, interpretation, and counseling to people with Duchenne or Becker muscular dystrophy who meet certain ...<|control11|><|separator|>
  138. [138]
    Incidence of Duchenne muscular dystrophy in the modern era
    Jun 27, 2022 · The cumulative incidence of disease was 19.7 per 100,000 male live births and 1 in 5076 live born males were diagnosed with DMD. Differences in ...
  139. [139]
    What is Duchenne?
    Prevalence. Duchenne impacts around 15,000 individuals in the United States, predominantly males, and over 300,000 globally. It is a condition that transcends ...
  140. [140]
    Origins and early descriptions of "Duchenne muscular dystrophy"
    This review traces the historical roots of DMD in the 19th century, from the early papers by Conte, Bell, Partridge, and Meryon through the classic monographs ...
  141. [141]
    A brief history of muscular dystrophy research - Neurology India
    The disorder widely known as Duchenne muscular dystrophy [DMD] was in fact first reported by Gaetano Conte in 1836 and just a few years later by Meryon in 1851.
  142. [142]
    HISTORICAL NOTES Early Observations on Muscular Dystrophy
    ABSTRACT. Early clinical observations on Duchenne muscular dystrophy can be traced through the works of Meryon, Little, Duchenne, Gowers, and Erb. Gowers ...
  143. [143]
    History of the disease | Duchenne Muscular Dystrophy
    ... Muscular Dystrophy ... coined the term 'Dystrophia muscularis progressiva' or progressive muscular dystrophy, a term that has been used ever since (Erb 1884).
  144. [144]
    Muscular Dystrophy History - Rare Disease Advisor
    Jul 1, 2021 · The milder form of DMD was first described by the German doctor Peter Emil Becker in the 1950s, who gave the disease his own name.2. First ...
  145. [145]
    The History of a Genetic Disease Duchenne Muscular Dystrophy or ...
    Oct 18, 2012 · This book, a second edition, tells the story of how the knowledge of DMD unfolded. It then describes the realisation that there were other types ...
  146. [146]
    Timeline of Discovery | Harvard Medical School
    Louis Kunkel and colleagues at Boston Children's discover the gene that causes Duchenne muscular dystrophy. 1988. Laser tattoo removal. Mass General ...
  147. [147]
    The discovery of dystrophin, the protein product of the Duchenne ...
    Jul 21, 2020 · This review describes the identification of the cause of the disorder in the late 1980s—dystrophin deficiency—and the emerging therapeutics ...
  148. [148]
    A Brief History of Duchenne
    In 1987 Dr Eric Hoffman and Dr Louis Kunkel discovered that DMD was caused by lack of the dystrophin protein, due to mutations in the DMD gene. DMD was one of ...<|control11|><|separator|>
  149. [149]
    AAV microdystrophin gene replacement therapy for Duchenne ...
    Aug 15, 2025 · Four exon skipping compounds have been approved by the US Food and Drug Administration (FDA) via the accelerated approval pathway; eteplirsen, ...The Dystrophin Protein · Adeno-Associated Virus · Anti-Transgene And Anti-Aav...
  150. [150]
    NCT06138639 | A Study of SGT-003 Gene Therapy in Duchenne ...
    This is a multicenter, open-label, non-randomized study to investigate the safety, tolerability, and efficacy of a single intravenous (IV) infusion of ...
  151. [151]
    Capricor Therapeutics Provides Regulatory Update on Deramiocel ...
    Sep 25, 2025 · FDA and Capricor aligned on endpoints for HOPE-3 pivotal trial; HOPE-3 pivotal trial completed; topline data expected mid-Q4 2025 to support ...
  152. [152]
    New Discovery Enables Gene Therapy for Muscular Dystrophies ...
    Nov 14, 2024 · A new technology, dubbed “StitchR,” surmounts this obstacle by delivering two halves of a gene separately; once in a cell, both DNA segments generate messenger ...
  153. [153]
    Review The recent clinical trial of losmapimod for the treatment of ...
    Facioscapulohumeral muscular dystrophy is a progressive muscle disorder that is likely linked to aberrant DUX4 expression. Losmapimod, a p38 kinase ...Missing: innovations | Show results with:innovations
  154. [154]
    SOLVE FSHD and Modalis Announce Strategic Collaboration to ...
    SOLVE FSHD and Modalis announce strategic collaboration to develop an innovative CRISPR-based epigenome editing treatment for facioscapulohumeral muscular ...
  155. [155]
    Dyne Therapeutics Announces Additional One-Year Clinical Data ...
    ... Trial of Zeleciment Basivarsen (DYNE-101) for Myotonic Dystrophy Type 1 (DM1). October 6, 2025. Download PDF. - Robust improvement demonstrated across ...
  156. [156]
    Dyne Therapeutics Announces FDA Breakthrough Therapy ...
    Jun 17, 2025 · The US Food and Drug Administration (FDA) has granted Breakthrough Therapy Designation to DYNE-101 for the treatment of myotonic dystrophy type 1 (DM1).<|control11|><|separator|>
  157. [157]
    Press Release: Sanofi's SAR446268 earns US fast track designation ...
    Sep 23, 2025 · The first patient is planned for enrolment in late 2025. Sanofi has already been granted orphan designations for SAR446268 in both the US (July ...
  158. [158]
    A Study of Long-term Safety and Efficacy of VX-670 in Participants ...
    The purpose of the study is to evaluate the long-term safety and tolerability, efficacy and pharmacokinetics of VX-670 in participants with Myotonic Dystrophy ...
  159. [159]
    Clinical Research | Muscular Dystrophy Association
    We are dedicated to ensuring the neuromuscular disease community is aware of ongoing and available research, including clinical trials and observational ...
  160. [160]
    Explore Clinical Trials - Parent Project Muscular Dystrophy
    Clinical trials and research studies are vitally important to improving health and quality of life for people with Duchenne muscular dystrophy.
  161. [161]
    The road toward AAV-mediated gene therapy of Duchenne ...
    May 7, 2025 · The disorder has presented numerous challenges, including the enormous size of the gene (2.2 MB), the need to target muscles body wide, and ...
  162. [162]
    Gene Therapy for Muscular Dystrophies: Progress and Challenges
    The present work reviews the theoretical background and recent progress in gene therapies for both DMD and other muscular dystrophies.
  163. [163]
    Is dystrophin immunogenicity a barrier to advancing gene therapy ...
    Apr 3, 2025 · Immunogenicity of dystrophin may challenge these efforts. The immune system can recognize dystrophin as a neo-antigen, just as it can recognize newly arising ...
  164. [164]
    Setback in gene therapy for Duchenne muscular dystrophy as ...
    Apr 8, 2025 · Risk factors include chronic muscle inflammation, exposure to small amounts of dystrophin via so-called “revertant fibres”, or the presence of ...<|separator|>
  165. [165]
    Improving the therapeutic efficacy of gene therapy for duchenne ...
    A critical factor we wish to highlight is the hostile inflammatory environment inherent to skeletal muscles' pathology in DMD, which may be further aggravated ...Abstract · Conflict of interest
  166. [166]
    PPMD's Gene Therapy Hub - Parent Project Muscular Dystrophy
    ELEVIDYS is an adeno-associated virus (AAV) vector-based micro-dystropin gene therapy indicated for the treatment of people with Duchenne muscular dystrophy who ...Approved Duchenne Gene... · Video Series 2: Gene... · Gene Therapy Trials &...
  167. [167]
    Barriers to diverse clinical trial participation in Duchenne muscular ...
    May 21, 2024 · In this study, we sought to explore the barriers to participation in clinical trials for Duchenne muscular dystrophy reported by Hispanic/Latino ...
  168. [168]
    Hurdles Remain Despite Progress in Gene Therapy for DMD - AJMC
    May 30, 2025 · DMD gene therapy faces challenges in safety, efficacy, and long-term outcomes, despite FDA approval of delandistrogene moxeparvovec. Future ...
  169. [169]
    Advancements & Challenges in Muscular Dystrophy Treatment - AJMC
    Jun 16, 2025 · Panelists discuss how recent advancements in muscular dystrophy treatment have evolved toward truly disease-modifying therapies.Missing: prognosis | Show results with:prognosis
  170. [170]
    [PDF] 2025 MDCC Action Plan for the Muscular Dystrophies Cross-cutting ...
    advances, leading to more realistic expectations of affected individuals, willingness to participate in projects and increased support for research ...