We place great importance on protecting the privacy of registry participants and the confidentiality of the information that participants provide to us.  Our staff receives training on how to protect privacy and confidentiality, and every year staff members sign a pledge to maintain confidentiality.  All forms completed by participants are kept in locked file cabinets, and all information stored on computers is protected with passwords and security software. Only registry staff have access to the file cabinets and computer files.  If you fill out a registry form on the internet, your information will be transmitted to us using security software.

We will never share your email address or any other personal information with anyone else.

We expect to share results from our research in articles published in medical journals and at scientific meetings.  Information you provide will be grouped with the information from other registry participants.  Published reports or presentations will include only the grouped data.  We will never use your name or other identifying information.

The registries have been approved by the Boston University Institutional Review Board.

If you have any questions about privacy or confidentiality, please email us at mdsinfo@slone.bu.edu.