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All 33 Myotonic Dystrophy trials and their US sites
Enter your ZIP code above to sort them by how far their nearest open site is from you.
- Efficacy, Safety, and Tolerability of Zeleciment Basivarsen (DYNE-101) in Participants With Myotonic Dystrophy Type 1Most sites in California, Texas and FloridaRecruitingPhase 3Ages 16+Dyne Therapeutics14US sites
11 states - Estab Biomarkers and Clinical Endpoints in Myotonic Dystrophy Type 1 (END-DM1)Most sites in California, Colorado and FloridaRecruitingAges 18-70Virginia Commonwealth University10US sites
9 states - Safety and Efficacy of Tideglusib in Congenital or Childhood Onset Myotonic DystrophyMost sites in California, Arkansas and IllinoisRecruitingPhase 2/3Ages 6-45AMO Pharma8US sites
7 states - A Study to Investigate the Safety, Tolerability, and Efficacy of SAR446268, an Adeno-associated Viral Vector-mediated Gene Therapy in Participants Aged 10 to 55 Years of Age With Non-congenital Myotonic Dystrophy Type 1Most sites in Florida, New York and PennsylvaniaRecruitingPhase 1/2Ages 10-55Sanofi5US sites
4 states - Study of ATX-01 in Participants With DM1Most sites in California, Florida and IowaRecruitingPhase 1/2Ages 18-64ARTHEx Biotech S.L.5US sites
5 states - Biomarker Development for Muscular DystrophiesMost sites in Massachusetts, North Carolina and PennsylvaniaRecruitingAges 5+Massachusetts General Hospital4US sites
3 states - DMCRN-02-001: Assessing Pediatric Endpoints in DM1Most sites in California, Kansas and New YorkRecruitingUp to age 59 MonthsVirginia Commonwealth University4US sites
4 states - Trial Readiness and Endpoint Assessment in Pediatric Myotonic Dystrophy ExtensionMost sites in Arkansas, Kansas and VirginiaRecruitingAges 3-17Virginia Commonwealth University3US sites
3 states - Cerebrospinal Fluid Biomarkers of Myotonic DystrophyOnly in MassachusettsRecruitingAges 18+Massachusetts General Hospital1US site
- Development of Quantitative Muscle Imaging as a Biomarker of Disease Endpoints in Myotonic DystrophyOnly in North CarolinaRecruitingAges 18-65Wake Forest University Health Sciences1US site
- Efficacy, Safety, and Tolerability of Zeleciment Rostudirsen (DYNE-251) Administered Intravenously Every 4 Weeks in Ambulatory Participants With Duchenne Muscular Dystrophy (FORZETTO)Only in North CarolinaRecruitingPhase 3Ages 4-18Dyne Therapeutics1US site
- Establishing Biomarkers and Clinical Endpoints in Myotonic Dystrophy Type 1 (END-DM1) ExtensionOnly in VirginiaRecruitingAges 18-70Virginia Commonwealth University1US site
- Investigating Exercise in Myotonic Dystrophy Type 2 (DM2)Only in MassachusettsRecruitingAges 18-70Massachusetts General Hospital1US site
- Metabolomic Biomarkers of Myotonic DystrophyOnly in MassachusettsRecruitingAges 14+Massachusetts General Hospital1US site
- Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy RegistryOnly in New YorkRecruitingUniversity of Rochester1US site
- Myotonic Dystrophy Family RegistryOnly in CaliforniaRecruitingMyotonic Dystrophy Foundation1US site
- Remote Assessments and Genetic Determinants of Congenital and Childhood Myotonic DystrophyOnly in New YorkRecruitingAges 0-17University of Rochester1US site
- Remote Assessments and Genetic Determinants of Myotonic DystrophyOnly in New YorkRecruitingAges 18-88University of Rochester1US site
- A Clinical Study of PGN-EDODM1 in People With Myotonic Dystrophy Type 1RecruitingPhase 2Ages 16-65PepGenNo US site yet
- A Phase 3 Study to Evaluate the Safety and Efficacy of AOC 1044 (Also Referred to as Delpacibart Zotadirsen) in Participants With DMD With Gene Mutations Amenable to Exon 44 SkippingRecruitingPhase 3Ages 7-16Avidity BiosciencesNo US site yet
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Who runs the Myotonic Dystrophy trials in the US, and what stage they are in
Of the 18 Myotonic Dystrophy trials with a US site, 3 are in Phase 3, the last stage before a company can ask the FDA for approval. Earlier Phase 1 or 2 tests of safety and dosing make up 2 of them. The remaining 13 have no drug phase, such as studies that follow people over time or test a device or a way of giving care. Companies run 5 of them, and universities, hospitals, foundations and government groups run 13. The sponsors with the most are Massachusetts General Hospital (4), Virginia Commonwealth University (4) and University of Rochester (3). The most recently listed one first appeared on ClinicalTrials.gov on November 3, 2026.
Myotonic Dystrophy trials in the US, state by state
Of the 18 Myotonic Dystrophy trials with a US site, 11 accept children under 18. Their open sites are in 17 states, most often New York, California and Virginia. A trial counts once in each state where it has an open site, and some trials accept both children and adults.
Show the other 9 states
US hospitals running the most Myotonic Dystrophy trials
Centers that run trials for a rare condition often see more people with it than most clinics do, so this list can also help you find doctors who know Myotonic Dystrophy.
- Virginia Commonwealth UniversityRichmond, Virginia5 trials
- Massachusetts General HospitalBoston, Massachusetts3 trials
- University of RochesterRochester, New York3 trials
- Arkansas Children's HospitalLittle Rock, Arkansas2 trials
- Houston Methodist Neurological InstituteHouston, Texas2 trials
- Rare Disease Research, LLCHillsborough, North Carolina2 trials
- University of California, Los AngelesLos Angeles, California2 trials
- University of FloridaGainesville, Florida2 trials
- University of Rochester Medical CenterRochester, New York2 trials
- University of Utah Clinical Neurosciences CenterSalt Lake City, Utah2 trials
Help getting to a Myotonic Dystrophy trial far from home
Ask the study team whether the trial pays back travel, parking and hotel costs, because many sponsors do. The FDA's guidance on paying research volunteers says paying back these costs does not count as pressuring someone to join.
These nonprofits also help patients reach care, and each one sets its own rules.
- Mercy Medical Angels
- Pays for gas cards, ground rides and airline tickets anywhere in the US, and it lists clinical trials as a reason to travel. Household income at or below 300% of the federal poverty guidelines, and usually a trip of 50 miles or more each way.
- Air Charity Network
- Volunteer pilots in all 50 states fly patients for free in small private planes, and members also fly people taking part in clinical trials. You must be able to walk and sit upright for the flight, show financial need and have a backup plan if weather cancels it.
- Ronald McDonald House
- Gives families a room near the hospital while a child gets care, through 394 House programs around the world. Families of a sick child, with rules set by each local chapter.
- Healthcare Hospitality Network
- Keeps a map of hospitality houses near hospitals, and most member houses charge little or nothing to patients and families. Each house sets its own rules, so check with the house near your study site.
Program details were checked on each program's website on October 24, 2026.
Questions about finding a Myotonic Dystrophy trial near you
Are there Myotonic Dystrophy clinical trials near me?
As of November 13, 2026, 33 Myotonic Dystrophy clinical trials are recruiting now and 2 are not yet recruiting. In the US, 18 of them have at least 1 open site, across 19 states. Enter your ZIP code on this page to rank every one of them by the distance to its closest open site, with the sites shown on a map.
Which states have Myotonic Dystrophy clinical trial sites?
Recruiting Myotonic Dystrophy trials list open sites in 19 states. New York, Virginia and California have the most, and the table on this page lists every state.
Are there Myotonic Dystrophy trials for children near me?
Of the 18 Myotonic Dystrophy trials with a US site, 11 accept children under 18. Their open sites are in 17 states, most often New York, California and Virginia. Each trial sets its own age limits, so check the ages listed on a trial before you contact it.
Who pays for travel to a Myotonic Dystrophy clinical trial?
Many trial sponsors pay back travel, parking and hotel costs, so ask the study team before you rule out a far-away site. The FDA's guidance says paying back these costs does not count as pressuring someone to join. Charities such as Mercy Medical Angels and Air Charity Network can also help with rides and flights.
What if there is no Myotonic Dystrophy trial near me?
Some trials send staff to your home or use a local lab, so fewer visits happen at the study site. You can also sign up on this page to get an email when a Myotonic Dystrophy trial opens a new site or changes status.
How is the distance to a trial site measured?
Distances are straight-line miles from the center of your ZIP code to each study site's listed location, not driving distance. Your browser looks up the ZIP code's coordinates with a free map service, Zippopotam.us, and the ZIP code is never sent to or stored by Trial Friend.
Clinical trials near you for related conditions
Source: ClinicalTrials.gov, trials with status Recruiting or Not yet recruiting. Refreshed every 6 hours; counts as of November 13, 2026. Sites that ClinicalTrials.gov lists as closed or withdrawn are left out. Children means the trial's age group includes people under 18.