Access Rights & Data Entry:
If you have cases you would like to add to the Registry you need to be given an authorization.
Subscription is free of charge.
Please download Access Right Form and Agreement PDF and send it to the email listed on the form.
You will then receive a User Name and Password in due course.
Patient data protection:
In order to render the patient data in the Registry as anonymous as possible, each case will be attributed a random number.
Names and birthdates will only be accessible to the centre entering the case.
In submitting a case to the Registry, the centre takes full responsibility concerning the correctness and confidentiality of the patient record that is submitted.
In all cases, we strongly recommend informing your local ethics committee before entering data.
Please obtain a written consent from the patient or legal guardian. Download PDF example of consent form.