Duchenne/Becker Muscular Dystrophy Registry for patients and carriers

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The FAIR-DMD registry is an observational, disease-specific registry coordinated by academic centers to collect and share data about individuals with Duchenne and Becker muscular dystrophy. It emphasizes Findable, Accessible, Interoperable, and Reusable data to support collaboration across European centers. Participation requires genetic confirmation of dystrophinopathy, treatment at a participating center, informed consent, and access to a smartphone or tablet for data exchange. Data collection includes clinical characteristics, treatments, and outcomes to inform future research and care strategies. The registry aims to interoperate with existing registries such as the Swiss-Reg-NMD and to enable broader data exchange among European Duchenne registries.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Genetically confirmed diagnosis of dystrophinopathy
* Female carriers only if they show clinical symptoms of a dystrophinopathy
* Treatment in one of the participating centers
* No age restrictions
* Ability to understand the patient information and sign the informed consent
* Consent capability by the patient themselves and/or by the parents
* Agreement to data exchange between the treating physicians, the telemedicine platform, and the registry
* Possession of a tablet or a smartphone

Exclusion Criteria:

* Missing legally valid consent form from the patient and/or legal guardians
* Project content is not understandable to the participant and/or legal guardians
* Not in possession of a tablet or smartphone

Where it's running

• Tirol Kliniken, Landeskrankenhaus Innsbruck
  Innsbruck, Austria Recruiting
• Charité - Universitätsmedizin Berlin
  Berlin, Germany Recruiting
• DRK Kliniken Berlin Westend
  Berlin, Germany Recruiting
• Universitätsklinikum Bonn, Zentrum für Kinderheilkunde
  Bonn, Germany Recruiting
• Universitätsklinikum Carl Gustav Carus TU Dresden
  Dresden, Germany Recruiting
• Universitätsklinikum Erlangen
  Erlangen, Germany Recruiting

Study contacts

• Principal investigator: Ulrike Schara-Schmidt, Prof. Dr. — Universitätsklinikum Essen, Klinik für Kinderheilkunde
• Study coordinator: Andreas Ziegler, Dr.
• Email: FAIR-DMD@med.uni-heidelberg.de
• Phone: 004962215632207

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Duchenne/Becker Muscular Dystrophy EHR Data Linkage

  This study tests whether consented patients’ electronic health records can be linked with the Duchenne Registry data to create a richer view of Duchenne and Becker muscular dystrophy care.

  Recruiting at 11 sites The Duchenne Registry · Little Rock, Arkansas and 10 other locations · NCT07609394

• Modeling heart failure in Duchenne and Becker muscular dystrophy to find surrogate heart measures

  This study will look at heart disease in people with Duchenne/Becker muscular dystrophy and carriers to see if MRI-based heart measures can predict death or major heart problems.

  Recruiting at 9 sites Vanderbilt University Medical Center · Sacramento, California and 8 other locations · NCT07674758

• DMD gene changes and heart function in boys and young men with dystrophinopathies

  This study will test whether specific DMD gene changes and routine heart tests (blood biomarkers, ECG, and echocardiography) can help identify early heart problems in boys and young men aged 2–24 with genetically confirmed dystrophinopathies.

  Recruiting Aristotle University Of Thessaloniki · Thessaloniki · NCT07515235

• An online registry for Duchenne and Becker muscular dystrophy patients

  This study is creating an online registry to help people with Duchenne and Becker muscular dystrophy connect with clinical trials and find helpful information about their condition.

  Recruiting The Duchenne Registry · Washington D.C., District of Columbia · NCT02069756

• How chronic pain changes over time in kids with Duchenne Muscular Dystrophy

  This study is following children and teens with Duchenne Muscular Dystrophy for 6 months to see how their chronic pain changes and how it affects daily life.

  Recruiting Antalya Training and Research Hospital · Antalya, Antalya · NCT07892196

• Bone health in adults with Duchenne muscular dystrophy: osteoporosis, fractures, and treatment

  This study looks at how common bone problems and fractures are in adults with Duchenne muscular dystrophy and what factors from childhood might affect bone health later on.

  Recruiting at 15 sites Istituto Giannina Gaslini · Bologna and 14 other locations · NCT07890883

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.