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Showing 1–24 of 24 matching trials from the live ClinicalTrials.gov search.
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Filters: Condition: Distal Myopathy Clear all
Completed No phase listed Observational

GNE-Myopathy Disease Monitoring Program (GNEM-DMP): A Registry and Prospective Observational Natural History Study to Assess GNE Myopathy or Hereditary Inclusion Body Myopathy (HIBM)

NCT01784679
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy, GNE Myopathy, Nonaka Disease, Quadriceps Sparing Myopathy (QSM), Distal Myopathy With Rimmed Vacuoles (DMRV)
Interventions
Not listed
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
Not listed
Enrollment
319 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2013 – 2017
U.S. locations
1
States / cities
Irvine, California
Source: ClinicalTrials.gov public record
Updated Apr 26, 2018 · Synced Jul 22, 2026, 12:02 PM EDT
Suspended Not applicable Interventional

A Randomized Trial Measuring the Effect of Decision Aids on Patients' Satisfaction, Conflict of Decision-making and Clinical Outcome

NCT01693094
View directory record Official record
Conditions
Trapeziometacarpal Arthrosis, Carpal Tunnel Syndrome, Cubital Tunnel Syndrome, Distal Radius Fractures, Trigger Finger
Interventions
Decision Aid
Behavioral
Lead sponsor
Massachusetts General Hospital
Other
Eligibility
18 Years and older
Enrollment
126 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2014 – 2027
U.S. locations
1
States / cities
Boston, Massachusetts
Source: ClinicalTrials.gov public record
Updated Apr 21, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Not yet recruiting Phase 1Phase 2 Interventional

First-in-human Study of UX016 in GNEM

NCT07511556
View directory record Official record
Conditions
GNE Myopathy
Interventions
UX016, Placebo
Drug · Other
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years to 55 Years
Enrollment
24 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2026 – 2028
U.S. locations
2
States / cities
Orange, California • Iselin, New Jersey
Source: ClinicalTrials.gov public record
Updated Apr 5, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Active, not recruiting Phase 2 Interventional

Multi-Center Study of ManNAc for GNE Myopathy

NCT04231266
View directory record Official record
Conditions
GNE Myopathy
Interventions
ManNAc, Placebo
Drug · Other
Lead sponsor
Leadiant Biosciences, Inc.
Industry
Eligibility
18 Years to 70 Years
Enrollment
54 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2022 – 2025
U.S. locations
10
States / cities
Los Angeles, California • Iowa City, Iowa • Kansas City, Kansas + 7 more
Source: ClinicalTrials.gov public record
Updated Jun 12, 2025 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 3 Interventional Results available

Phase 3 Randomized, Double-Blind, Placebo-Controlled Study to Evaluate Sialic Acid in Patients With Glucosamine (UDP-N-acetyl)-2-epimerase Myopathy (GNEM) or Hereditary Inclusion Body Myopathy (HIBM)

NCT02377921
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy, Distal Myopathy With Rimmed Vacuoles, Distal Myopathy, Nonaka Type, GNE Myopathy
Interventions
aceneuramic acid extended-release (Ace-ER), Placebo
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years to 55 Years
Enrollment
89 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2015 – 2017
U.S. locations
4
States / cities
Irvine, California • St Louis, Missouri • New York, New York
Source: ClinicalTrials.gov public record
Updated Jun 26, 2019 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 2 Interventional Results available

An Open Label Phase 2 Extension Study of Higher Dose Sialic Acid-Extended Release (SA-ER) Tablets and Sialic Acid-Immediate Release (SA-IR) Capsules in Patients With Glucosamine (UDP-N-acetyl)-2-Epimerase (GNE) Myopathy

NCT01830972
View directory record Official record
Conditions
GNE Myopathy, Hereditary Inclusion Body Myopathy (HIBM)
Interventions
SA-ER 500 mg, SA-IR 500 mg
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years to 65 Years
Enrollment
59 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2013 – 2017
U.S. locations
3
States / cities
Los Angeles, California • St Louis, Missouri • New York, New York
Source: ClinicalTrials.gov public record
Updated Apr 10, 2018 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 1 Interventional

Safety and Pharmacokinetics of Sialic Acid Tables in Patients With Hereditary Inclusion Body Myopathy (HIBM)

NCT01359319
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy (HIBM)
Interventions
Sialic Acid Extended Release (SA-ER) Tablets, Sialic Acid Extended Release (SA-ER) Tables
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years to 70 Years
Enrollment
26 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2011 – 2012
U.S. locations
2
States / cities
Costa Mesa, California • New York, New York
Source: ClinicalTrials.gov public record
Updated May 20, 2012 · Synced Jul 22, 2026, 12:02 PM EDT
Terminated Phase 2 Interventional Results available

Exploratory Study of Danicamtiv in Patients With Primary Dilated Cardiomyopathy (DCM) Due to Genetic Variants or Other Causalities

NCT04572893
View directory record Official record
Conditions
Primary Familial Dilated Cardiomyopathy
Interventions
danicamtiv
Drug
Lead sponsor
Bristol-Myers Squibb
Industry
Eligibility
18 Years to 80 Years
Enrollment
41 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2024
U.S. locations
12
States / cities
La Jolla, California • Washington D.C., District of Columbia • Tampa, Florida + 9 more
Source: ClinicalTrials.gov public record
Updated May 20, 2025 · Synced Jul 22, 2026, 12:02 PM EDT
Withdrawn No phase listed Observational

Alternatives to Hand Therapy for Hand Surgery Patients

NCT03779958
View directory record Official record
Conditions
Carpal Tunnel Syndrome, Trigger Finger, Ganglion Cysts, Distal Radius Fracture, Finger Fracture, De Quervain Syndrome
Interventions
Mobile App
Other
Lead sponsor
Stanford University
Other
Eligibility
18 Years to 100 Years
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2023
U.S. locations
1
States / cities
Redwood City, California
Source: ClinicalTrials.gov public record
Updated Aug 5, 2021 · Synced Jul 22, 2026, 12:02 PM EDT
Completed No phase listed Observational

A Natural History Study of Patients With GNE Myopathy and GNE-Related Diseases

NCT01417533
View directory record Official record
Conditions
GNE Myopathy, GNE Related Diseases
Interventions
Not listed
Lead sponsor
National Human Genome Research Institute (NHGRI)
NIH
Eligibility
4 Years to 80 Years
Enrollment
78 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
Started 2011
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 15, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Active, not recruiting Phase 4 Interventional Accepts healthy volunteers

The Efficacy of Liposomal Bupivacaine in Ultrasound Guided Supraclavicular Nerve Blocks for Hand and Wrist Surgery

NCT06806410
View directory record Official record
Conditions
Hand Surgery, Wrist Surgery, Elbow Surgery, Fracture Fixation, Dupuytren Contracture, Finger Fracture, Wrist Arthropathy, Distal Radius Fracture
Interventions
Liposomal bupivacaine (LB), Dexamethasone
Drug
Lead sponsor
St. Luke's Hospital, Pennsylvania
Other
Eligibility
18 Years and older
Enrollment
120 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2023 – 2025
U.S. locations
1
States / cities
Bethlehem, Pennsylvania
Source: ClinicalTrials.gov public record
Updated Feb 5, 2025 · Synced Jul 22, 2026, 12:02 PM EDT
Terminated Phase 2 Interventional Results available

A Study to Evaluate the Safety of Aceneuramic Acid Extended Release (Ace-ER; UX001) Tablets in Glucosamine (UDP-N-acetyl)-2-Epimerase (GNE) Myopathy (GNEM) (Also Known as Hereditary Inclusion Body Myopathy [HIBM]) Patients With Severe Ambulatory Impairment

NCT02731690
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy, Distal Myopathy With Rimmed Vacuoles, Distal Myopathy, Nonaka Type, GNE Myopathy, Quadriceps Sparing Myopathy, Inclusion Body Myopathy 2
Interventions
Aceneuramic Acid Extended-Release
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years and older
Enrollment
42 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2016 – 2018
U.S. locations
3
States / cities
Orange, California • St Louis, Missouri • New York, New York
Source: ClinicalTrials.gov public record
Updated Feb 18, 2019 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 2 Interventional

A Phase 2 Study to Evaluate the Dose and Pharmacodynamic Efficacy of Sialic Acid-Extended Release (SA-ER) Tablets in Patients With GNE Myopathy or Hereditary Inclusion Body Myopathy

NCT01517880
View directory record Official record
Conditions
GNE Myopathy, Hereditary Inclusion Body Myopathy
Interventions
Sialic Acid Extended Release (SA-ER), Placebo
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years to 65 Years
Enrollment
46 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2012 – 2013
U.S. locations
3
States / cities
Los Angeles, California • St Louis, Missouri • New York, New York
Source: ClinicalTrials.gov public record
Updated Jun 15, 2016 · Synced Jul 22, 2026, 12:02 PM EDT
Completed No phase listed Observational Accepts healthy volunteers

Genetics of Pediatric-Onset Motor Neuron and Neuromuscular Diseases

NCT02532244
View directory record Official record
Conditions
Spinal Muscular Atrophy, Charcot-Marie-Tooth Disease, Muscular Dystrophy, Spinal Muscular Atrophy With Respiratory Distress 1, Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Neuromuscular Disease, Peroneal Muscular Atrophy
Interventions
sample collection
Other
Lead sponsor
Nemours Children's Clinic
Other
Eligibility
1 Month and older
Enrollment
230 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2015 – 2024
U.S. locations
3
States / cities
Wilmington, Delaware • Jacksonville, Florida • Orlando, Florida
Source: ClinicalTrials.gov public record
Updated Dec 18, 2024 · Synced Jul 22, 2026, 12:02 PM EDT
Terminated No phase listed Observational

Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome

NCT01144741
View directory record Official record
Conditions
Freeman-Sheldon Syndrome, Arthrogryposis Distal Type 2A, Whistling Face Syndrome, Craniocarpotarsal Dysplasia, Craniocarpotarsal Dystrophy, Freeman-Sheldon Syndrome Variant, Sheldon-Hall Syndrome, Arthrogryposis Distal Type 2B, Gordon Syndrome, Arthrogryposis Distal Type 3, Arthrogryposis Distal Type 1, Arthrogryposis, Distal, Type 1A, Arthrogryposis Distal Type 1B, Arthrogryposis, Distal, Craniofacial Abnormalities, Arthrogryposis
Interventions
PTSD Checklist-Civilian (PCL-C), Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale (CES-D), Functional Enquiry (or Review of Systems) Form, Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome (STOP-FSS) Questionnaire, FSRG Semi-Structured Quality of Life Interview (FSRG SSQLI), Medical Records Review
Other
Lead sponsor
Freeman-Sheldon Research Group, Inc.
Other
Eligibility
Not listed
Enrollment
2 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2010 – 2022
U.S. locations
1
States / cities
Buckhannon, West Virginia
Source: ClinicalTrials.gov public record
Updated Jun 20, 2022 · Synced Jul 22, 2026, 12:02 PM EDT
Terminated Phase 3 Interventional Results available

Study to Evaluate the Safety and Efficacy of Aceneuramic Acid Extended-Release (Ace-ER) Tablets in Patients With Glucosamine (UDP-N-acetyl)-2-epimerase Myopathy (GNEM) or Hereditary Inclusion Body Myopathy (HIBM)

NCT02736188
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy, Distal Myopathy With Rimmed Vacuoles, Distal Myopathy, Nonaka Type, GNE Myopathy, Quadriceps Sparing Myopathy
Interventions
Aceneuramic Acid Extended-Release Tablets
Drug
Lead sponsor
Ultragenyx Pharmaceutical Inc
Industry
Eligibility
18 Years and older
Enrollment
143 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2016 – 2018
U.S. locations
5
States / cities
Los Angeles, California • Orange, California • St Louis, Missouri + 1 more
Source: ClinicalTrials.gov public record
Updated Mar 23, 2023 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Not applicable Interventional Results available

EMG Training for Altering Activation Patterns After Stroke

NCT03619772
View directory record Official record
Conditions
Stroke, Weakness, Muscle, Coordination Lack
Interventions
Bilateral, Unilateral
Other
Lead sponsor
Shirley Ryan AbilityLab
Other
Eligibility
18 Years to 80 Years
Enrollment
20 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2023
U.S. locations
1
States / cities
Chicago, Illinois
Source: ClinicalTrials.gov public record
Updated Mar 19, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 1 Interventional

Phase I Clinical Trial of ManNAc in Patients With GNE Myopathy or Hereditary Inclusion Body Myopathy (HIBM)

NCT01634750
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy (HIBM), GNE Myopathy
Interventions
ManNAc
Drug
Lead sponsor
National Human Genome Research Institute (NHGRI)
NIH
Eligibility
18 Years to 70 Years
Enrollment
26 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2012 – 2013
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Oct 18, 2017 · Synced Jul 22, 2026, 12:02 PM EDT
Recruiting No phase listed Observational Accepts healthy volunteers

Muscle Health Measurements Using Electrical Impedance Myography

NCT07502989
View directory record Official record
Conditions
Myopathy, Muscular Dystrophies, Myositis, Myofibrillar Myopathy, Congenital Myopathy, Distal Myopathy, Myopathies
Interventions
Electrical Impedance Myography
Device
Lead sponsor
Beth Israel Deaconess Medical Center
Other
Eligibility
18 Years to 89 Years
Enrollment
150 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2025 – 2027
U.S. locations
1
States / cities
Boston, Massachusetts
Source: ClinicalTrials.gov public record
Updated Apr 2, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Not applicable Interventional

Graded Motor Imagery for Women at Risk for Developing Type I CRPS Following Closed Treatment of Distal Radius Fractures

NCT02957240
View directory record Official record
Conditions
Musculoskeletal Pain, Fractures, Closed, Distal Radius Fracture, Complex Regional Pain Syndromes
Interventions
Standard Care, Motor Representation Techniques
Behavioral
Lead sponsor
University of Minnesota
Other
Eligibility
55 Years and older · Female only
Enrollment
15 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2024
U.S. locations
1
States / cities
Minneapolis, Minnesota
Source: ClinicalTrials.gov public record
Updated Aug 20, 2024 · Synced Jul 22, 2026, 12:02 PM EDT
Not listed No phase listed Observational

Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome

NCT05419245
View directory record Official record
Conditions
Freeman-Burian Syndrome, Freeman-Sheldon Syndrome, Whistling Face Syndrome, Sheldon-Hall Syndrome, Freeman-Sheldon Syndrome Variant, Arthrogryposis Distal Type 1, Arthrogryposis Distal Type 3, Gordon Syndrome
Interventions
Guided Health History for Freeman-Burian Syndrome Questionnaire, Freeman-Burian syndrome Semi-Structured Quality of Life Interview, Medical Records Review, PTSD Checklist for DSM-5, Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale, Review of Systems, FACE-Q | Craniofacial - Appearance of the Face, FACE-Q | Craniofacial - Appearance Distress, FACE-Q | Craniofacial - Facial Function
Other
Lead sponsor
Dufresne, Craig, MD, PC
Other
Eligibility
Not listed
Enrollment
20 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2022 – 2023
U.S. locations
1
States / cities
Fairfax, Virginia
Source: ClinicalTrials.gov public record
Updated Jul 18, 2022 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 2 Interventional Results available

An Open Label Phase 2 Study of ManNAc in Subjects With GNE Myopathy

NCT02346461
View directory record Official record
Conditions
GNE Myopathy
Interventions
ManNAc
Drug
Lead sponsor
National Human Genome Research Institute (NHGRI)
NIH
Eligibility
18 Years to 60 Years
Enrollment
12 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2015 – 2018
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Apr 15, 2019 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Not applicable Interventional Results available

Altering Activation Patterns Post-stroke

NCT02418949
View directory record Official record
Conditions
Stroke, Muscle Spasticity, Hemiparesis
Interventions
Cyproheptadine, Placebo for Cyproheptadine, Active Movement Practice (AMP), Passive Cyclical Stretching
Drug · Other
Lead sponsor
Shirley Ryan AbilityLab
Other
Eligibility
18 Years to 80 Years
Enrollment
96 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2015 – 2022
U.S. locations
1
States / cities
Chicago, Illinois
Source: ClinicalTrials.gov public record
Updated Mar 30, 2026 · Synced Jul 22, 2026, 12:02 PM EDT
Completed Phase 1 Interventional

Intravenous Immune Globulin to Treat Hereditary Inclusion Body Myopathy

NCT00195637
View directory record Official record
Conditions
Hereditary Inclusion Body Myopathy
Interventions
Immune Globulin
Drug
Lead sponsor
National Human Genome Research Institute (NHGRI)
NIH
Eligibility
18 Years to 70 Years
Enrollment
4 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2005 – 2006
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Dec 3, 2019 · Synced Jul 22, 2026, 12:02 PM EDT