UK FSHD patient registry update

Published Date
Dr Özge Özkaya

We recently received an annual report for the UK FSHD patient registry, which is curated by the TREAT-NMD team at Newcastle University and funded by Muscular Dystrophy UK. The registry was launched in May 2013 and has now reached a total of 639 registrants.

The registry contains information about people affected by FSHD and is invaluable in finding suitable people for clinical trials. It also helps to develop best practice care and communicate with registered people about advances in research.

Dr Tersinha Evangelista, Clinical Research Associate at the John Walton Muscular Dystrophy Research Centre in Newcastle gave a presentation about the UK FSHD registry at the patient information day, which we organised in Oxford in March 2016.

Following her presentation, we interviewed Dr Evangelista about clinical trial capacity in the UK; she described how the UK FSHD registry makes it possible to reach over 500 people in just one day, who might be eligible to participate in new clinical trials testing potential drugs.

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