Learn more about the registration process

If you are eligible and you wish to register with the International Dysferlinopathy Registry, it is important that you understand what you will have to do, and what will be done with the information you provide. For this reason, we ask that you first read the Information for (Adult) Patients or Information for Children document carefully.


Online registration process 

Create a personal user account on the International Dysferlinopathy Registry website by completing and validating the online (electronic) version of the Registration and Consent Questionnaire (I). An e-mail confirming the creation of your account and providing you with your login information will be sent to you automatically.
Log into your account to securely complete your online (electronic) Registration Medical Questionnaire (II), with the help of your doctor(s) if necessary.
The International Dysferlinopathy Registry will contact the doctor(s) involved in the diagnosis and follow-up of your disease, as you indicated in Questionnaire I, to obtain or confirm data necessary for the Registry. In particular, the Registry needs to ask your doctor(s) for a copy of your dysferlin genetic report (Questionnaire III).
Your registration can only be confirmed after you complete and validate your electronic Registration Questionnaires I and II, and after your doctor transmits the information that is requested by this Registry (Questionnaire III).

Paper registration process 

For patients without internet access, paper copies of the Registration and Consent Questionnaire (I) and Registration Medical Questionnaire (II) need to be completed, signed and sent to the Registry. Copies of all the registration forms can be easily downloaded or mailed to you upon request.
The International Dysferlinopathy Registry will contact the doctor(s) involved in the diagnosis and follow-up of the registrant’s disease, as they indicated in Questionnaire I, to obtain or confirm data necessary for the Registry. In particular, the Registry needs to ask the patient's doctor(s) for a copy of the patient's dysferlin genetic report (Questionnaire III).
Your registration can only be confirmed after we receive Registration Questionnaires I and II correctly filled in and signed, and after your doctor transmits the information that is requested by this Registry (Questionnaire III).