Rare Disease Registry - Patient Registration
For legal reasons you must be 18 or over in order to register here. If you are the parent or guardian of a child that you would like to register as a patient, please select the appropriate registration option below. If you are a patient who is under 18, please get your parent or guardian to fill in this form with you.

Username error: This username already exists, please choose a different username.

If you have already registered with Myotubular and Centronuclear Myopathy Registry and would like to update your data or add another patient, you don't have to register again. Just go to the login page and login with the e-mail address and password you previously registered with.

If you have forgotten your password, please click on 'forgotten your password?'

Personal data

Please select the appropriate registration option below. If you are registering a child as a patient, please enter your own details in the ‘Parent/Guardian Details’ section. Please note that you must be the patient's parent or guardian to enter a patient other than yourself.
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 and contain a number. You will receive occasional automated emails from the registry, for example to validate your email address. What is your preferred language for these emails?.
Parent/Guardian Details
Patient Details