Muscular Dystrophy UK worked with TREAT-NMD to set up a FSHD patient registry. The establishment of patient registries is vital as they focus on the information that is needed to find patients eligible for clinical trials and help clinicians develop care standards. Patients can link to the research community and have the opportunity to access information directly relevant for their condition.
For more information about the FSHD patient registry, visit the registry online. You can find out how many people have registered so far and join yourself.
A curator based at the Institute of Genetic Medicine in Newcastle has been in post since the beginning of 2012 to establish the registry, which cost £25,000. £20,000 a year is now needed to manage and maintain the registry.
The team in Newcastle has unique expertise in setting up patient registries. Professor Hanns Lochmuller, one of the Centre’s directors, has developed national and international registries within the scope of TREAT_NMD and is a leading expert in this area.
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