The Duchenne Registry A Global Patient-Reported Database for Duchenne and Becker Muscular Dystrophy and Carrier Females

What this Trial Is About

Researchers are gathering information from individuals with Duchenne and Becker muscular dystrophy, as well as female carriers, through an online patient-report registry. This registry aims to help connect patients with ongoing clinical trials and research studies, while also providing education about care and research in these conditions. It serves as an important resource for clinicians and researchers by offering access to de-identified patient data that supports advances in treatment and care. The Duchenne Registry is part of the TREAT-NMD Neuromuscular Network. The registry was established in 2007 by Parent Project Muscular Dystrophy with support from NIH, CDC, and Emory Genetics, and is now solely maintained by Parent Project Muscular Dystrophy. Participants provide updates on their genetic variants and medical history every 6 to 12 months and are followed throughout their lifetime. This ongoing data collection helps researchers track ambulation status and other health aspects related to Duchenne and Becker muscular dystrophy and carrier status. Participants are asked to regularly update their medical history online, allowing long-term follow-up and monitoring. The registry collects important information such as genetic variants and ambulation status to support research and clinical care improvements. Certified genetic counselors are available to assist with questions about registration, genetic testing, and clinical trials. The registry thus provides continuous engagement and data collection to advance understanding and treatment of these neuromuscular conditions.

The Duchenne Registry