New registry aims to improve care for muscular dystrophy patients

NCT ID NCT07402122

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a registry for people with Duchenne and Becker muscular dystrophy, as well as symptomatic female carriers. The goal is to collect health data and quality-of-life information to monitor how new therapies work in real-world settings. Up to 1,500 participants from German-speaking countries will be enrolled, with no age restrictions. The registry will help doctors and researchers improve care and develop better treatment guidelines.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to
If successful, this registry could provide real-world evidence on how new treatments work in everyday care, helping to improve guidelines and quality of life for patients.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test a new drug or therapy, and results depend on consistent data collection from many centers.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Universitätsklinik Heidelberg, Zentrum für Kinder- und Jugendmedizin

    Heidelberg, Germany

  • Universitätsklinikum Essen Klinik für Kinderheilkunde I

    Essen, Germany

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