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

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

This observational study will collect data on adults with Duchenne muscular dystrophy to determine how frequently fragility fractures occur and to explore factors from childhood that may influence adult bone health. It will also document how fractures are treated and measure blood markers related to bone metabolism and bone-muscle communication. The goal is to fill gaps in understanding bone health in adults with DMD and to inform management strategies. Participation requires a confirmed DMD diagnosis, age over 18, and consent, while several medical conditions and procedures may exclude participation.

Why it matters

Who can join: the full rules

Inclusion Criteria - Study Group (DMD Patients)

1. Genetic or histological diagnosis of Duchenne muscular dystrophy (DMD).
2. Age over 18 years.
3. Willingness to participate in the study and provision of written informed consent.

Exclusion Criteria - Study Group (DMD Patients)

1. Current enrollment in another clinical study.
2. Inability to undergo dual-energy X-ray absorptiometry (DXA) due to severe kyphoscoliosis.
3. Previous surgery for scoliosis.
4. Severe respiratory failure, defined as the need for non-invasive ventilation (NIV) 24 hours per day or the presence of a tracheostomy.
5. Severe cardiomyopathy, defined as a left ventricular ejection fraction (LVEF) below 30%.
6. Severe intellectual disability (IQ below 45) and inability to perform functional assessments.

Where it's running

• Centro Malattie Neuromuscolari dell'età Evolutiva, Bologna
  Bologna, Italy Recruiting
• Associazione La Nostra Famiglia Eugenio Medea IRCCS, Bosisio Parini
  Bosisio Parini, Italy Recruiting
• Associazione La Nostra Famiglia Eugenio Medea IRCCS, Conegliano
  Conegliano, Italy Recruiting
• IRCCS Istituto Giannina Gaslini
  Genova, Italy Recruiting
• Dipartimento di Scienze Cliniche e Sperimentali, Università di Brescia
  Gussago, Italy Recruiting
• Azienda Universitaria Policlinico G. Martino
  Messina, Italy Recruiting

Study contacts

• Study coordinator: Chiara Panicucci
• Email: chiarapanicucci@gaslini.org
• Phone: +39 010 56362756

Similar studies

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

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• Duchenne/Becker Muscular Dystrophy EHR Data Linkage

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

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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.