Join the registry (doctors or health care providers)


If you are interested to join the registry and enter de-identified data of your patient in the registry, please follow the next four steps:

1. Parents or legal representatives of the patient should first complete the online registration form

2. Parents/legal representatives receive an unique patient code and hand over this unique code to you as a doctor

3. Register online as a doctor with this unique code

4. Fill in the doctors questionnaire

Detailed information on the registry can be found in the information leaflet.

Should you have any questions, don`t hesitate to contact us at


If you decide to join the registry, please complete the online registration form. Please note, if you would like to sign up more than 1 patient, please complete the registration procedure again for each individual patient.

Please provide a valid e-mail address. A confirmation e-mail will be sent to this address to complete the registration procedure.

This unique code will be provided to the parents upon completion of their registration procedure (including provision of informed consent).