UK Patient Registry for FSHD

Register now

Please complete this form and click on the “Continue” button to start the registration. Please see the patient information and data protection pages for information on how the data you enter will be used.

If you have already registered and would like to update your data or add another patient, you don't have to fill in this form again. Just go to the login page and login with the e-mail address and password you previously registered with.

Note to professionals: Doctors and medical professionals cannot register here, if you are interested in being involved please contact us.

Personal data

Please enter your own details here, even if you are not the patient yourself. If you are registering a child as a patient, you will be able to enter his or her details in a later step. Please note that you must be the patient’s parent or guardian to enter a patient other than yourself.

as day/month/year, e.g. 19/03/1967

User account

With your e-mail address and the password you choose here, you can login at any time to view or edit your data. In order to protect your personal data against unauthorised access, please choose a password which is hard to guess and write it down in a safe place. Note that the password is case-sensitive. Your password must be at least 6 characters long.

e.g. joe_bloggs@example.com