Consent Instructions

 Providing informed consent is quick (five minutes or less) and easy:

Step 1: Log in to your profile page with your user name.

Step 2: You will automatically be directed to the informed consent form on the profile page. The consent form can also can be accessed from your profile page by clicking on the Update link in the Account Information box.

FARE Profile Image Consent

Step 3: Update your consent by checking the four boxes at the bottom of the participant page.

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Step 4: Complete the Assent survey. If you are not directed to the Assent survey automatically, you can access the survey by clicking on the Assent link in the Medical Surveys box on your profile page.

FARE Profile Image Assent

Step 5: Select the appropriate consent option and click the Next button.

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Step 6: If you are consenting for a minor, select the appropriate assent option and click the Next button.


Step 7: If you have registered a minor between the ages of 7 and 17, you will be presented with additional language. Place a check on the box and click the next button.

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If your profile page includes only one patient, you're all finished! Now you are ready to complete any incomplete surveys.

To update consent for more than one patient:

If your profile page includes more than one patient, you'll need to give consent for each patient separately. Click on each patient's name in the Family Members box on your profile page, and repeat the steps.

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If you have any questions, please contact the FARE Patient Registry Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it..


Adult - Completing informed consent for an adult participant


Minor - Completing informed consent for a minor


Family Member - Completing informed consent for additional family members