All procedures for the registry have been approved from the Virginia Commonwealth University's Institutional Review Board (IRB).
We are working with Vibrent Health to collect the data for this registry. Vibrent has created the website and smartphone application, and has a record of working with other researchers to collect data with respect to the highest standards of privacy and confidentiality. Information collected through the Vibrent platform/app will be encrypted and stored securely on a cloud-based server. Specifically, our app will use Amazon Web Services (AWS) server to store participant information securely, which will then be moved to a secure server behind firewalls at the Virginia Commonwealth University (VCU) School of Medicine. Information that could directly identify participants, such as name, date of birth, address, and telephone number, will be removed from survey records and will be encrypted separately on the AWS server. VCU Information Security has approved Vibrent.
Information that could directly identify participants, like name, date of birth, address, and telephone number, will be removed from study records and will be stored separately, and limited to only study PI and authorized research staff. Electronic information will be saved as password encrypted files and stored on a secure server behind firewalls at the VCU School of Medicine.