Next Steps for Signing up my child or legal dependent with WS?

1. View the Join Now page of this website (see link on the left). Please read our Consent/Authorization Statement (which explains the purposes, benefits, and risks of the Registry). If you agree to this statement, you will provide your contact information and choose a user ID and password.
   
   
2. Complete a simple questionnaire online through this secure website, or on paper if you prefer. The questions collect basic medical and developmental information pertaining to your child or legal dependent with WS.
   
   
3. If you agree to the Consent/Authorization statement and submit the questionnaire online, your enrollment is already confirmed. If you mail the Consent/Authorization statement, Registration questions, or Questionnaire to us, we will confirm your enrollment. If you do not receive confirmation within a month after submitting the last form, please contact the Registry Coordinator (see Contact Us).

What happens after I join the Registry?

1. The information you provide will be added to the Registry database. We will contact you once per year to get new and updated information about your child or legal dependent with WS.
   
   
2. Information that does not contain the Registry participant's name or contact information will be shared with researchers interested in beginning new studies.
   
   
3. We will email you about studies open to your child or legal dependent with WS, on behalf of qualified researchers (whose proposals have been approved by our Scientific Review committee and the researcher's Institutional Review Board).
   
   
4. After you review study information (item 3, above), you will select whether you want more information about the study. You may decide:
   
   
   • That you do not want any additional information about this study, or
   • That you do want the researcher to contact you with more information.
     
     
5. Please inform us of your selection (through the Registry website) within three months. If we don't hear from you, we will send you a reminder email. If we receive no response after another month, we will provide your contact information to the researcher so he/she can give you more details about their study. This will not obligate you to join their study.
   

What happens after I tell you whether I want more information about a study?

1. If you select that you do not want more information about a study, you will not be contacted about that study again.
   
   
2. If you select that you want more information, we will give your name and contact information, and the name of your child or legal dependent with WS, to the researcher. The researcher will give you more information about their study and confirm that your child/legal dependent meets eligibility criteria so you can then decide whether or not to participate.
   

If you would like to discuss a study further or join a study, you can directly call or email the researcher.

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Please remember: The choice is entirely up to you to participate in some, all, or none of the studies for which your child or legal dependent with WS is eligible.

Receiving additional information about a study does not mean that you have to join the study.