Our sister organization, Ring14 Italy, maintains a clinical database with information related to those suffering from Ring14 and other 14th chromosome disorders.
Doctors and researchers can request a password to access the database through its entry page. There are three different types of access:
- Family Access: Each family can access and see the data about their own family member. They cannot change or enter data, and they cannot see information about anyone else.
- Researcher Access: Researchers can see all of the data that has been entered, but the identities of each individual is hidden by a code; no names are revealed. Data cannot be changed or entered. If there are other reports that the researcher wants beyond those listed, he or she can request a specific query and Ring14 Italy will conduct it.
- Full Access: All of the data and identifying information is visible, and data can be entered or changed at will. This level of access is restricted to site administrators and affiliated researchers.