The Duchenne Registry

Launched by THE DUCHENNE REGISTRY · Feb 20, 2014

Keywords

ClinConnect Summary

The Duchenne Registry is an online program designed to support individuals with Duchenne and Becker muscular dystrophy, as well as their families. The main goal of the Registry is to connect patients with clinical trials and research studies that are currently looking for participants. It also provides important information about care and research related to these conditions. By joining the Registry, patients and their families can help researchers by sharing valuable health information, which is essential for improving treatments and care for Duchenne and Becker muscular dystrophy.

To be eligible for the Duchenne Registry, participants need to have a diagnosis of Duchenne or Becker muscular dystrophy. This includes both women who show symptoms and those who do not, as well as female carriers of the disease. However, individuals with other types of muscular dystrophy are not eligible. By joining, participants can expect to be part of a community that helps advance research and treatment options for these conditions. The Registry is open to people of all ages and genders, making it a welcoming resource for anyone affected by these muscular disorders.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.
• Exclusion Criteria:
• • Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).