The Computerized Register of Hereditary Hemorrhagic Telangiectasia is a voluntary Database, web-based (internet access), designed to collect, exploit and export anonymised data of patients and families, offering the ability to produce customized reports with data collected. This is a organized by families database, that will look for synergy with other existing databases, and that will have quality controls established by the participating investigators.
The inserted data is exclusive property of each investigator, who will decide the use or not of his data for the possible studies or substudies that can be made. Each investigator and/or hospital center will have each own personalized access key.
The Administrators and Developers of the Databas are committed to maintaining the security, integrity and privacy of data recorded, ensuring total confidentiality of the same.
