The Dutch FSHD registry was launched in March 2015 and is run by the dept. of Neurology, Radboud University Nijmegen Medical Centre in collaboration with the Dutch Association for FSHD and Spierziekten Nederland, the Dutch Association of Neuromuscular Disorders.
This collaboration between patients and researchers will increase knowledge of FSHD with the ultimate goal to treat symptoms and improve quality of life. The website www.FSHDregistratie.nl informs (future) participants about the registry goals, to whom the registry is open, how to register, how many are registered at the moment and where to go with questions regarding the registry.
We aim to extend the registry in the future with a feedback function enabling participants to make use of the data they provided, integrated with data based on the whole registry population or specific subgroups.