How will my information be handled & secured?
The information in the registry is maintained by the Principal Investigator and designated registry team staff. Only designated research staff will have access to the information in the registry. All electronic information is stored securely and is password-protected. Every seven years, we will re-contact you to see if you would like to remain in the registry.
This registry is being overseen by an Institutional Review Board (IRB). An IRB is a group of people who perform independent reviews of research studies. Your health information is protected by a federal privacy law, called HIPAA, that we must follow. Information that we collect and review for the registry is part of that protected health information. By joining the registry, you are giving us permission to collect and review your information as described above.
We will hold all information related to your participation in the registry confidential except when sharing the information is required by law. The principal investigator, and under certain rare circumstances, the Office of Human Research Protection (OHRP) and the Institutional Review Board (IRB), will be able to inspect and copy confidential registry-related records which identify you by name. This means that absolute confidentiality cannot be guaranteed.