Duchenne Muscular Dystrophy Clinical Trial
Official title:
The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)
The Duchenne Registry is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of the Registry is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, The Duchenne Registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to de-identified datasets provided by patients and their families-information that is vital to advances in the care and treatment of Duchenne. The Duchenne Registry is a member of the TREAT-NMD Neuromuscular Network.
The Duchenne Registry (previously DuchenneConnect) was created in 2007 by Parent Project Muscular Dystrophy (PPMD), with assistance from the NIH, the CDC, and Emory Genetics. In early 2011, PPMD alone began financing the registry's operation and maintenance, and is the sole guardian of The Duchenne Registry and its material. Questions may be addressed to the Duchenne Registry Coordinators at telephone 888-520-8675 or coordinator@duchenneregistry.org. The Duchenne Registry Coordinators are certified genetic counselors who are available to answer questions regarding the registration process, genetic testing and counseling, and clinical trials and research studies. ;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Completed |
NCT05575648 -
Dual Task in Duchenne Muscular Dystrophy
|
N/A | |
| Terminated |
NCT03907072 -
Efficacy and Safety Study of WVE-210201 (Suvodirsen) With Open-label Extension in Ambulatory Patients With Duchenne Muscular Dystrophy
|
Phase 2/Phase 3 | |
| Completed |
NCT04335942 -
Characterization of the Postural Habits of Wheelchair Users Analysis of the Acceptability of International Recommendations in the Prevention of Pressure Sores Risk by Using a Connected Textile Sensor
|
N/A | |
| Active, not recruiting |
NCT04906460 -
Open-label Study of WVE-N531 in Patients With Duchenne Muscular Dystrophy (FORWARD-53)
|
Phase 1/Phase 2 | |
| Active, not recruiting |
NCT02500381 -
Study of SRP-4045 (Casimersen) and SRP-4053 (Golodirsen) in Participants With Duchenne Muscular Dystrophy (DMD)
|
Phase 3 | |
| Enrolling by invitation |
NCT05967351 -
A Long-term Follow-up Study of Participants Who Received Delandistrogene Moxeparvovec (SRP-9001) in a Previous Clinical Study
|
Phase 3 | |
| Recruiting |
NCT03067831 -
Bone Marrow-Derived Autologous Stem Cells for the Treatment of Duchenne Muscular Dystrophy
|
Phase 1/Phase 2 | |
| Recruiting |
NCT01834040 -
Study Safety and Efficacy of BMMNC for the Patient With Duchenne Muscular Dystrophy
|
Phase 1/Phase 2 | |
| Completed |
NCT02246478 -
A Study of TAS-205 for Duchenne Muscular Dystrophy
|
Phase 1 | |
| Active, not recruiting |
NCT01772043 -
Duchenne Muscular Dystrophy Tissue Bank for Exon Skipping
|
N/A | |
| Terminated |
NCT01168908 -
Revatio for Heart Disease in Duchenne Muscular Dystrophy and Becker Muscular Dystrophy
|
Phase 2 | |
| Completed |
NCT00758225 -
Long-term Safety, Tolerability and Efficacy of Idebenone in Duchenne Muscular Dystrophy (DELPHI Extension)
|
Phase 2 | |
| Completed |
NCT03680365 -
Your Voice; Impact of Duchenne Muscular Dystrophy (DMD) on the Lives of Families
|
||
| Recruiting |
NCT03513367 -
The Validation Process for Confirmation of the French Version of the Pediatric Quality of Life Inventory :PedsQLTM.
|
||
| Recruiting |
NCT05712447 -
Duchenne Muscular Dystrophy Video Assessment Registry
|
||
| Recruiting |
NCT01484678 -
Magnetic Resonance Imaging and Biomarkers for Muscular Dystrophy
|
||
| Completed |
NCT03319030 -
Aerobic Exercise in Boys With Duchenne Muscular Dystrophy (DMD)
|
||
| Terminated |
NCT01753804 -
A Prospective Natural History Study of Progression of Subjects With Duchenne Muscular Dystrophy.
|
N/A | |
| Completed |
NCT02530905 -
Dose-Titration and Open-label Extension Study of SRP-4045 in Advanced Stage Duchenne Muscular Dystrophy (DMD) Patients
|
Phase 1 | |
| Terminated |
NCT04708314 -
An Open-Label Study of Golodirsen in Non-Ambulant Patients With Duchenne Muscular Dystrophy
|
Phase 4 |