No. The choice to participate in studies is completely up to you.
Will my child/ legal dependent be removed from the Registry if we don't join any studies?
No. The purpose of the Registry is to give you more information about studies that are available to your child or legal dependent with WS. You can join as many studies or as few as you would like.
Why have I not received the same study announcements as some other parents I know?
Researchers are often looking for very specific features in potential study participants. Therefore, most people will not receive the same study announcements. Remember, our goal is to provide you with study announcements that are appropriate for your child or legal dependent with WS.
Do you need a blood sample?
No! Your child or legal dependent with WS will be happy to hear that we are not collecting blood, saliva, or any other tissue samples as part of joining the Registry.
What do I need to do if I no longer want to be part of the Registry?
If you have any concerns about the Registry, we would like you to contact us before you choose to leave the Registry so we can address your concerns if at all possible. We will remove your information if you ask us, in writing, to remove it. Future researchers will no longer have access to your information once it is removed, but past researchers may still retain your information. Please go to the Withdraw page, print out and complete the Withdrawal form, and mail or fax the form to us:
Fax:Do I have to pay to join the Registry?
617-724-1911
Mail:
No. You will not need to pay to join the Registry.
Will you pay me to join the Registry?
No. Joining the Registry is completely voluntary and not associated with any payment to you.
When will I find out the results of a study my child has joined?
We ask researchers who use the Registry to provide their results to both the WSA and us when they publish their findings. This will allow the Registry staff to work quickly with the WSA to give overall results back to the WS community.
I saw the overall study results, but I want to see the results for my child specifically. Can you give me those?
Unfortunately, neither we nor the WSA can give you specific study results for your child or legal dependent. You will need to contact the researcher who runs the study to see if they can provide results to you.
Will you give out my contact information without my approval?
We will not give private information to anyone for any purposes not described on this website or in the Authorization form. As detailed on the “About Joining” page, we will give contact information and name of the Registry participant to researchers in two cases:
- You requested a researcher contact you to provide more information about their study.
- We did not receive your response whether you would like more information about a study, even after we sent you a reminder email.
