Join the registry (parents or legal representatives)


If you consider joining the registry, please follow the next five steps:

1. Read the information leaflet form

2. Register online

3. Consent (fill in the informed consent form online)

4. Fill in the parents questionnaire

5. Ask the doctor of your child/family member to also participate in the registry and share the unique patient code with your doctor

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

Feel free to discuss participation with your child’s physician or family members. Should you have any questions, don`t hesitate to contact us at


If you decide to join the registry, please provide your contact details below. If you would like to sign up more than 1 child or family member, please complete the registration procedure for each person individually. After registration, you will receive a confirmation e-mail with further instructions.

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