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 patients fill out a registry form on the internet, their information will be transmitted to us using security software.

We expect to share results from our research in articles published in medical journals and at scientific meetings.  Information patients 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 patients' names or other identifying information.

If you have any questions about privacy or confidentiality, please call us toll-free at 1 (800) 231-3769 or email us at registry@slone.bu.edu.