10-year follow-up study for FSHD patients
Part of Bones, joints & muscles, Brain & nervous system, Genetic & congenital clinical trials.
This study follows FSHD patients for 10 years to see how the disease progresses. It includes people who were in earlier FSHD studies and some new patients with genetic confirmation of FSHD.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You must have a genetic diagnosis of FSHD.
- You must have been in the FSHD-FOCUS 2 or FSHD-iFocus study, or be a new patient with genetic confirmation.
- You cannot be in another medication trial during this study.
- If you have metal implants (like pacemakers or metal clips), you can still join the study, but you cannot have an MRI scan.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study looks at muscle MRI images and walking patterns (3D gait analysis) in people with FSHD. It helps researchers understand how the disease affects movement and muscle over time.
This trial tests a new stem cell treatment (ULSC) for people with FSHD, a type of muscular dystrophy. It aims to see if the treatment is safe and if it can help improve arm strength and daily movement.
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 study tests an experimental medicine called Del-brax (AOC 1020) for people with facioscapulohumeral muscular dystrophy (FSHD). The goal is to see if it can help improve muscle strength and slow the disease. You may be able to join if you have a confirmed FSHD diagnosis and can walk at least 10 meters on your own.
This study follows people with FSHD2 over 18 months to learn how the disease progresses and affects daily life. No new drugs are tested—just regular check-ups and an MRI scan.
This trial is a registry, meaning it collects detailed medical information to better understand fibromuscular dysplasia (FMD) and a specific type of heart-vessel dissection (SCAD) linked to FMD. It may help researchers learn who is at risk and guide better care in the future.
Hear when a new FSHD - Facioscapulohumeral Muscular Dystrophy trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.