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FSH Register

The UK FSHD Patient Registry AcNMDcelerating research and improving clinical practice.

The UK FSHD patient registry is funded by the Muscular Dystrophy Campaign and has our full support. Please read below for more information or go straight to the registry website to take part today.

The registry is a database of information about people with the FSHD. The main goal is to help in the design, planning and recruitment into research studies and clinical trials. This is increasingly important as research is moving quickly and more is known about FSHD than ever before. However it also provides a link to the research community providing you with regular Newsletters and updates.

To join the registry you will be asked to complete a series of short online questionnaires. The information you provide may be used to help inform future research projects into FSHD. You will be asked to nominate a doctor to enter your genetic information.

The registry is run from Newcastle University by Professor Hanns Lochmuller and the registry curator, Libby Wood, is your point of contact and available to answer any questions – elizabeth.wood2@ncl.ac.uk. The data you provide is kept on a secure computer server protected like online bank accounts and only people appointed by Prof Lochmuller are allowed access to it.

If, in the future, a researcher would like to use the registry the study or trial will be reviewed by a steering committee made up of patients, patient organisations and doctors. Researchers and companies may contact the registry to see if any patients suitable for their trial are registered. The registry will never give them any of your personal details. If you may be suitable the registry will contact you and you will be able to decide if you wish to contact them directly for more information.

You can find out more information on the registry website.

Register today  https://www.fshd-registry.org/uk/