Data protection and your rights


What data will be collected? 


Where will my data go if I register with the International Dysferlinopathy Registry? 


Who will have access to my records? 


How can the International Dysferlinopathy Registry guarantee that my data will be kept confidential? 


Do I have access to my data in the International Dysferlinopathy Registry? 


How can I update my data if they change? 


Do I have to participate in the International Dysferlinopathy Registry and can I withdraw from it if I change my mind?