Registration & Consent
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We invite you to take part in the 3q29 deletion registry. Individuals eligible to have a registry profile include those with a diagnosis of 3q29 deletion syndrome.

Steps for participating in the registry.

There are five easy steps to join the registry.

  • Step 1: Review the online consent form, and choose the appropriate consent option.
  • Step 2. Review the online assent form, and choose the appropriate assent option.
  • Step 3: Review the HIPPA Patient Authorization, and choose the appropriate authorization option.
  • Step 4: Create an account: choose a user name and a password. These will be used each time you log in to your profile.
  • Step 5: Enter the security code and click register.

Once you are registered, you can start entering information for the participant with 3q29 deletion syndrome.

Step 1

Please review the online consent form. 

If you are the parent or legal guardian of a child who is being asked to participate, the term “you” used in this consent refers to you and your child.

By checking the box below, you certify that you have read the consent form and agree to be in the study. By certifying that you have read the consent form, you will not give up any of your legal rights. You may print a copy of the consent to keep.

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Step 2

If the study participant is between 6-16 years old, please review the online assent form for pediatric subjects.

Please choose the assent option that applies:

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Step 3

Review the HIPPA Patient Authorization, and choose the authorization option that applies to you.

By checking the box below, you certify that you have read and understand the HIPPA authorization form. You may print a copy of this authorization form to keep.

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Step 4

The person entering the data

Your First Name:
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Your Last Name:
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Your Relationship to Participant:
* This Field is required Information for: Your Relationship to Participant : Please tell us how you are related to the participant.
E-mail / Re-enter email:
* This Field is required Information for: Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration. * This Field is required Information for: Verify Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration.
Username:
* This Field is required Information for: Username : Please enter a valid username.  No spaces, at least 3 characters and contain 0-9,a-z,A-Z
Password / Re-enter password:
* This Field is required Information for: Password : Please enter a valid password.  No spaces, at least 6 characters and contain lower and upper-case letters, numbers and special signs * This Field is required Information for: Verify Password : Please enter a valid password.  No spaces, at least 6 characters and contain lower and upper-case letters, numbers and special signs

Step 5


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I agree to the terms and conditions

Please enter the code below

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