Myotonic Dystrophy 1 Clinical Trial
Official title:
Myotonic Dystrophy Family Registry
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials.
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) such as disease symptoms and demographic information to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials. The Registry supports trials and studies, making it easier for researchers to explore data and identify possible trial and study participants. It is the first DM registry that gives community members the opportunity to explore anonymous Registry data, to see what the DM community looks like and what others with DM experience. It also provides information on the community of people living with DM, giving researchers and other medical professionals the opportunity to improve how they treat those affected with DM and learn more about how and why certain treatments work and don't work. ;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Recruiting |
NCT02880735 -
Ventilatory Response After Non Invasive Ventilation in Type 1 Myotonic Dystrophy
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N/A | |
| Recruiting |
NCT06378216 -
Myotonic Dystrophy Type 1 Congenital and Juvenile Form: From Diagnosis to Rehabilitation [MDCJ-NeuBeRe]
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| Active, not recruiting |
NCT06089018 -
Observational Study of Digital Biomarkers of Myotonia and Gait in Adults and Children With Myotonic Dystrophy
|
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| Completed |
NCT05662150 -
Low-frequency Repetitive Nerve Stimulation in Myotonic Dystrophy Type 1
|
N/A | |
| Active, not recruiting |
NCT04698551 -
NIPD on cffDNA for Triplet Repeat Diseases
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| Completed |
NCT05027269 -
Study of AOC 1001 in Adult Myotonic Dystrophy Type 1 (DM1) Patients
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Phase 1/Phase 2 | |
| Completed |
NCT04712422 -
Poor Neck Proprioception May Cause Balance Deficits in Myotonic Dystrophy 1
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| Recruiting |
NCT05006924 -
Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1
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| Recruiting |
NCT04656210 -
Myotonic Dystrophy - Vascular and Cognition
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| Completed |
NCT04634682 -
Effect of MYODM on Quality of Life, Fatigue and Hypersomnia in Patients With Myotonic Dystrophy Type 1
|
N/A | |
| Withdrawn |
NCT06270186 -
Evaluation of Cognitive Functions in 20 Patients With Type 1 Myotonic Dystrophy With Virtual Reality Approach
|
N/A | |
| Recruiting |
NCT06411288 -
Global Study of Del-desiran for the Treatment of DM1
|
Phase 3 | |
| Recruiting |
NCT06300307 -
Study of ATX-01 in Participants With DM1
|
Phase 1/Phase 2 | |
| Completed |
NCT02729597 -
Tracking the Brain in Myotonic Dystrophies: a 5-year Longitudinal Follow-up Study
|
N/A | |
| Recruiting |
NCT06138743 -
Study of ARO-DM1 in Subjects With Type 1 Myotonic Dystrophy
|
Phase 1 | |
| Not yet recruiting |
NCT05532813 -
Evaluation of the Efficacy and Safety of Metformin in the Myotonic Dystrophy Type 1 (Steinert's Disease)
|
Phase 3 | |
| Active, not recruiting |
NCT04886518 -
Safety and Efficacy of Pitolisant on Excessive Daytime Sleepiness and Other Non-Muscular Symptoms in Patients With Myotonic Dystrophy Type 1
|
Phase 2 | |
| Completed |
NCT05036447 -
Myotonic Dystrophy Type 1 and Resistance Exercise
|
N/A | |
| Recruiting |
NCT03424460 -
Venous Thromboembolism in Myotonic Dystrophy Type 1
|
N/A | |
| Recruiting |
NCT05865483 -
Profile of Dysphagia in Myotonic Dystrophy Type 1 (DM1)
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