To begin you and your child will be provided with information sheets on what the study is, you will be given time to review this information and ask any questions you may have. If you are both happy to participate, as the child’s legal gardian, you will be asked to sign a consent form. If it is appropriate for your child, they will also be asked to sign an assent form.   From that point on your child’s care will continue as planned by their clinician. There are no extra tests or treatments for your child to undergo if they are a participant in an observational registry.  Their data will simply be collected and entered in the registry by their clinical team.  If at any point you or your child wishes to withdraw from the registry please contact the clinical team.