1. You may give your permission for your medical caregiver (such as a doctor) to enter your information into the registry. In this case, either the medical caregiver or the participant/participant’s legal guardian may be the account holder.

• Remember: The account holder is responsible for completing and updating the surveys and for informing the participant about messages from the registry.

2. Create an account by providing your name and E-mail address. Choose a Username and Password. Select the relationship to the participant as "medical caregiver".

• The participant’s email address can be entered as a secondary email.

3. Read the online consent form and check the appropriate consent/assent boxes.

• The medical caregiver should print and provide a copy of the consent page to the participant.

4. Enter the Security code and click "Register."
5. On the next page, "Account Details", fill out the information for the person who is being registered.
6. Complete the Medical Survey based on answers from the participant.

• Tip: the survey does not need to be completed in one session.

7. Print the Medical Survey answers and provide a copy to the participant.
8. Complete the additional surveys as they are offered based on answers from the participant. Print the answers for the remaining surveys and provide a copy to the participant.