A research registry is defined as the collection and maintenance of data in which:
- the individuals in the registry have a common condition,
- the individuals in the registry may be contacted for future studies, and
- the names/data of the individuals may be used by investigators other than the original research team.
If a registry is being created, the investigator should include the name of the registry, the method of data storage, how subjects are informed of their inclusion in the registry, and how subject identity and information is protected in the New Project Application. The Informed Consent Document should inform a potential subject that if s/he decides to participate, his/her name will be stored in a registry and s/he may be contacted in the future by investigators other than the current research team.
Not all compilations of individuals' names and associated data constitute a research registry.
A database is not necessarily a registry. The key element in a registry is that names and other identifying information are being stored so that people other than the original research team may access the registry information in the future to contact individuals for other studies. For further guidance, please contact the Human Subjects Office.