 The master list of registry participants with their study identifiers will be kept separately from the research database. This master list will be stored in an encrypted file within the research office of each site investigators under their supervision. Only the site investigators and their local research staff will have access to this list. The inherited nature of these conditions makes the master list an important and very sensitive document. It will be very important that this list is maintained so that participants may be contacted and informed of any new findings the research may reveal that may affect themselves and their family members. 