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Myotonic dystrophy

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Where research stands todayUpdated 15 Nov 2026
Trial-stage treatments you can join–open now
in United States
Studies published in the last 12 months00 in people · 0 in animals · 0 in the lab
Support organisations2organisations
in United States1 helpline
Offer tissue or dataGive a sample or your health data to research.Approved treatmentsMedicines approved for myotonic dystrophy around the world.“Miracle cure” fact checkerSaw a cure online? Check it before you pay.

Trial-stage treatments and research studies you can join

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Your ageShows only trials that take people your age.
Phase
  1. Trial-stage treatmentPhase 3Taking people
    Phase 3 trial: zeleciment basivarsen (DYNE-101)
    Atlanta, United StatesAlso Baltimore, Columbia, Gainesville, Hillsborough, Houston, Indianapolis, La Jolla, Los Angeles, …Age 16+
  2. Trial-stage treatmentPhase 2
    Phase 2 trial: VX-670
    Richmond, United StatesAlso St Louis, Winston-SalemAge 18+
  3. Trial-stage treatmentPhase 1/2Taking people
    Phase 1/2 trial: SAR446268
    Gainesville, United StatesAlso New York, Philadelphia, Richmond, TampaAge 10 to 55
  4. Trial-stage treatmentPhase 3
    Phase 3 trial: Del-desiran (AOC 1001)
    Baltimore, United StatesAlso Boston, Cincinnati, Columbus, Denver, Durham, Gainesville, Houston, Indianapolis, …Age 16+
  5. Trial-stage treatmentPhase 3Taking people
    Zeleciment rostudirsen (DYNE-251) for boys and young people with Duchenne muscular dystrophy

    Tests zeleciment rostudirsen in walking boys with Duchenne muscular dystrophy.

    Hillsborough, United StatesAge 4 to 18
  6. Trial-stage treatmentPhase 1/2Taking people
    Phase 1/2 trial: ATX-01
    Fairway, United StatesAlso Gainesville, Iowa City, Los Angeles, RichmondAge 18 to 64
  7. Trial-stage treatmentPhase 2/3Taking people
    Phase 2/3 trial: Tideglusib
    Chicago, United StatesAlso Iowa City, Little Rock, Los Angeles, Norfolk, Palo Alto, Pittsburgh, Richmond, Rochester, …Age 6 to 45
  8. Research studyTaking people
    Observational study: Myotonic Dystrophy 1
    Columbus, United StatesAlso Denver, Gainesville, Houston, Iowa City, Kansas City, La Jolla, Los Angeles, Richmond, …Age 18 to 70
  9. Research studyTaking people
    Observational study: Congenital Myotonic Dystrophy
    Fairway, United StatesAlso Los Angeles, Richmond, RochesterUp to age 4
  10. Research studyTaking people
    Observational study: Myotonic Dystrophy Type 1
    Boston, United StatesAge 14+
  11. Research studyTaking people
    Looking for gentler ways to track muscular dystrophy using urine, blood and scans

    Tests urine, blood and painless muscle scans in people with muscular dystrophy.

    Boston, United StatesAlso Pittsburgh, Winston-SalemAge 5+
  12. Research studyTaking people
    Observational study: Myotonic Dystrophy Type 1
    Boston, United StatesAge 18+
  13. Research studyTaking people
    Observational study: DM1
    Richmond, United StatesAge 18 to 70
  14. Trial-stage treatmentTaking people
    Clinical trial: Myotonic Dystrophy 2
    Boston, United StatesAge 18 to 70
  15. Research studyTaking people
    Observational study: Congenital Myotonic Dystrophy
    Kansas City, United StatesAlso Little Rock, RichmondAge 3 to 17
  16. Research study
    Observational study: Myotonic Dystrophy Type 2
    Winston-Salem, United StatesAge 30 to 65
  17. Research studyTaking people
    Observational study: Myotonic Dystrophy Type 1
    Rochester, United StatesAge 0 to 17
  18. Research studyTaking people
    Observational study: Myotonic Dystrophy Type 1 (DM1)
    Rochester, United StatesAge 18 to 88
  19. Research studyTaking people
    Observational study: Myotonic Dystrophy
    Winston-Salem, United StatesAge 18 to 65
  20. Research study
    Creating Stem Cell Models of Inherited Heart Rhythm Disorders

    Collects blood or skin samples from patients with inherited heart rhythm disorders and healthy volunteers.

    Baltimore, United StatesAge 18 to 85

Support organisations

Patient organisations and helplines in United States, for you and your family.

We have no organisations for this disease listed in United States yet. General support there is below.

General support in United States

  • 988 Suicide & Crisis Lifeline

    US national 24/7 free and confidential lifeline for anyone in suicidal crisis or emotional distress, reachable by calling or texting 988 or by chat.

    988lifeline.org
  • MedlinePlus

    Free, easy-to-read health information service of the US National Library of Medicine (NIH) on diseases, conditions, drugs and wellness.

    medlineplus.gov

International organisations

Patient organisation umbrella bodies

Offer tissue or data

There are three ways to help research move faster.

Give tissue or bloodA biobank stores your sample so many research teams can use it.No open programme yet
Share your health dataA patient registry collects your health data, without your name, for research.How to join
Take part as a healthy volunteerStudies also need people without the disease, for comparison. Family and friends can help.Volunteer

“Miracle cure” fact checker

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Before you pay for anything, ask three things

  1. Is there a published study in people?
  2. Can I have the full price in writing?
  3. What does my doctor say?

“Cures” others already fact-checked

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