UK Facioscapulohumeral (FSHD) Muscular Dystrophy Patient Registry
The UK FSHD patient Registry is run from Newcastle University with support from the MDUK and in close collaboration with other clinical centres and patient representatives across the country.
The UK FSHD Patient Registry is being run from Newcastle University by Chiara Marini Bettolo. The primary goals of the Registry are to facilitate clinical research in FSHD and to allow clinicians and researchers to better understand the condition.
Website:
www.fshd-registry.org/ukEmail Address:
fshdregistry@treat-nmd.eu
