Withdrawing from the Registry

We are sorry that you would like to withdraw your child or legal dependent from the Registry.

If this decision is related to a concern you had about the Registry, or about an experience you had with a researcher, please give us this feedback. We would like this Registry to be a positive experience for the WS community, and both your positive and negative feedback are important to us.

The Withdrawal form, available for download below, will allow you to remove the Registry participant from the Registry. If you cannot download this form, please contact us and we will mail or fax the form to you.

Click here for a copy of the Withdrawal Form.

Please Note:

The Withdrawal form must be clearly filled out, and mailed or faxed back to the Registry for processing. Printing clearly or typing your responses will help us ensure that your child's information is removed from the Registry as soon as possible.

We will contact you when we receive the Withdrawal form to confirm that you wish to withdraw enrollment for the Registry participant. This form must be filled out by the person who enrolled the participant. If that person is no longer available, please contact us.

After you withdraw your child or legal dependent, we will not send you information about any new studies. You may still receive information about studies you previously responded to. If you accidentally receive information about new studies for which your child or legal dependent may qualify, this may be due to the announcement being sent before we received and processed the withdrawal. If you receive information regarding new studies, please indicate that you would like no other information regarding this study.