Search ClinicalTrials.gov by condition, location, age, recruiting status and mutation, then send trial identifiers to the Duchenne clinic. Verify status with the listed study contact because databases and site openings change.
What this means in real life
Start with ClinicalTrials.gov and search the condition “Duchenne muscular dystrophy.” Select studies that are recruiting or not yet recruiting, then filter by age and location. Do not stop at the title: open the study record and read eligibility, intervention, visit schedule, locations, sponsor and contact information. Save the NCT number because names and marketing descriptions can be confusing.
Create a one-page prescreening profile with exact mutation, age/date of birth, ambulatory status, key functional measures, current and prior treatments, trial history, major lab or antibody results and travel radius. Send NCT numbers and this profile—securely, when requested—to the Duchenne clinic and study contact. A registry listing can be outdated, and a “recruiting” study may not have a slot at the nearest site.
Never change steroids or another treatment simply to become eligible until the site has reviewed the record and the treating clinician agrees. Eligibility is determined by the study team under the protocol, not by an online matching tool.
A practical checklist
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Search ClinicalTrials.gov for DMD and recruiting/not-yet-recruiting status.
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Record NCT numbers, site locations and central contacts.
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Prepare an exact mutation and treatment-history summary.
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Ask the DMD clinic to identify major medical or treatment conflicts.
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Get written prescreening before travel or changing current care.
Questions to bring with you
Use these at the clinic, school meeting, equipment evaluation, program interview or benefits call. Write down the answers and who owns the next step.
- Is the desired site actually open and screening?
- Which criterion is most likely to include or exclude this person?
- How many visits, procedures and years of follow-up are required?
- What costs and travel are covered?
- What standard treatment continues during the study?
Important context
Individual needs, eligibility and safety can differ. Confirm the plan with the relevant Duchenne-experienced clinician, therapist, school team or program before acting.
Sources used for this guide
Direct links are included so families can check the original guidance and bring it to qualified professionals.
Content review: July 18, 2026. Medical labels, trials, benefits and programs can change after publication.
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