Opting out of the registry

Opting out of the registry


The NGOR is an opt-out registry. This means that you need to tell us if you do not want to participate. If we do not hear from you, we may start collecting information about your diagnosis, treatment and health outcomes. This may happen any time after two weeks from the date on the cover letter mailed to you.

There are two types of opt out:

  • Partial opt-out
    Allow the registry to receive data about your diagnosis, treatment and health outcomes but receive no further contact from the registry, including through questionnaires.
  • Full opt-out
    Request that the registry receives no information about your diagnosis, treatment and health outcomes, and receive no further contact from the registry. If the registry has already received your clinical information by the time you request a full opt-out, then this information will be deleted.