What are the Potential Benefits of Participating in the Registry?

Those who participate in the Registry may not receive any direct benefit, but the Registry will:

• Help the WS community learn how WS changes as people get older
  


• Promote access to studies that test new therapies in individuals with WS
  
  
• Help families by letting you learn about studies of potential interest
  
  
• Directly connect you with researchers to make it easy to participate in studies of your choosing
  
  
• Help researchers identify study participants faster
  
  
• Make it easier to get study findings back to families
  
  
  

What are the Potential Risks of Participating in the Registry?

As with all electronic communication and databases, there is a small chance that private information about your child or legal dependent with WS could be stolen or viewed by someone outside of the Registry. We are doing all we can to prevent this.

• Our website and database are secure and encrypted to keep your contact information and questionnaire answers private.
  
  
• All paper forms you mail to us are kept in a locked room in a secure building.
  
  
• Researchers using our database will not have access to names or contact information until you give us permission to provide it.

The questionnaire includes some very sensitive questions about health and developmental concerns in your child or legal dependent. Though we hope you will answer all the questions, you are not required to answer anything that makes you uncomfortable.