PARENTS AND PRESEARCHERS WORKING TOGETHER TO ADVANCE THE UNDERSTANDING OF WILLIAMS SYNDROME
Privacy and Security
The Registry works very hard to protect the privacy of you, your family member with Williams syndrome, and your information. The many security measures in place include:
o Privacy (HIPAA) rules that everyone working on the Registry follows.
o Gold standard internet security systems such as encryption.
o A secure database meeting hospital standards for all electronic data collected.
o A locked room in a secure building with limited access for all paper forms mailed to us.
o Username and password protected log-in to the Registry website.
Use of Your Information
Only authorized staff has access to the information you provide to the Registry. Researchers using the Registry will not have access to your name or contact information until you give permission for it to be shared.
The content of the Registry website has been reviewed and approved by the Massachusetts General Hospital Institutional Review Board (IRB). The Registry only announces new studies that have received IRB approval from the researcher’s own institution and that have completed the Registry’s study proposal approval process.