Analysis of State Actions Regarding Donor Registries. Access to Registry Information


Recovery agency personnel and hospital personnel who may be involved in the organ, tissue, or eye recovery process need to be able to quickly access the donor registry information. The group noted that criteria for who should have access to the registry database must be established. Additionally, once established, proper authorization should be assured by developing a system to validate that those attempting to access the system have a right to do so.

The method by which the information is accessed merits further consideration. Several options exist, including using a toll-free 800-number, the World Wide Web, or a direct method of accessing the database independent of the Web. Other discussion topics in this area focused on managing the data in the registry or public entry into the database, and included the following.

  • The database should be accessible at all times.
  • A clear public entry/access to sign up or to opt out of the registry must exist.
  • Registries should be viewed and maintained as an information clearinghouse.
  • Procedures to ensure data integrity must exist.
  • Data fields and formats must be uniform between states.
  • In the case of linking service areas, clear guidelines for use and access should be established.