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Registration Process Explained

Registration is a simple 3 part process. You will need to:

Step 1: Agree to the Informed Consent Document and indicate that you are at least 18 years old. This agreement page can be printed.
   
Step 2: Provide basic contact information and create a username and password. Your username can be either your email address or a unique one you have created.

If you are registering as the parent, guardian or caregiver of someone, you will still provide your contact information. You will be the person contacted about the study as the dependent child or adult cannot be contacted directly.
   
Step 3: Complete registry information.
Here you will be asked to enter some basic health information about yourself or your dependent. You only are required to complete some basic contact information and date of birth. All other information is considered optional; however, the more information you provide the easier it is for us to match you to trials.
   
  There are 4 parts to the registry information:
   
  Part 1: Demographic information such as gender, race, ethnicity, etc.
  Part 2: Health Information is provided through a series of check box options as well as through optional text boxes for additional diagnoses not listed in condition categories.
  Part 3: Medications that are currently being taken.
  Part 4: Additional information such as biological family history, where you are willing to drive to for research, and how you heard of the site.

Registration Complete!

After you have completed the registration process, you will be directed to the "My Account" page. This will be your homepage every time you log into the registry.

On this page, you will be able to manage and update any information that you have provided during registration. You will also be able to add or delete your account and or your dependent’s registry profile. This page is designed to be a “one stop shop” for managing the information you provided during registration.

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