UK facial and shoulder muscle disease patient registry

This is a registry study that collects health information from people with myotonic dystrophy (a genetic muscle disease that causes weakness and stiffness) or facioscapulohumeral muscular dystrophy (a genetic condition affecting shoulder and face muscles), as well as their unaffected family members. The information helps researchers better understand these conditions and track how they progress over time.

This study creates a patient-driven health and research platform for people with FSHD. It aims to collect information to better understand the condition and improve future research and care.

This trial is a registry that collects health information from people with spinal muscular atrophy (SMA). It helps researchers understand the condition better and may support future studies and treatments.

This is a national registry that collects information from people who have (or may soon have) myotonic dystrophy. By joining, you help researchers better understand the disease and may make future studies easier to access.

This trial builds and studies a national database that collects patient-reported outcomes (answers about symptoms and function) and patient/clinic information for musculoskeletal (muscle and joint) care. It may help improve how these services are delivered by showing what works in real-world primary/community care.

This trial studies how well certain physical/movement tests work in people with facioscapulohumeral muscular dystrophy (FSHD). It may help clinicians measure changes more accurately and tailor care over time.