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Patient Privacy • Research Institute of Orlando (RIO)
If a patient/volunteer agrees to join a trial, some people will need to be notified about the participation.
The patient’s primary physician who is responsible for their healthcare on a day-to-day basis
The doctor and research team looking after the patient in the trial
It is the responsibility of the patient to notify their Primary Care Physician that they are participating in a trial; it is not the clinical sites obligation.
The fact that someone is taking part in a trial will be written in that patient’s medical notes. Investigators cannot tell anyone else about a participation in a trial unless the patient gives his or her permission.
During the trial, all of the information collected about the participant will be kept confidential, as with any other medical records. When investigators publish the results of a trial, they are not allowed to include any information that would identify people – a patient’s name will not be used in any reports or publications.
The end of a clinical trial has no impact on the confidentiality of those records; they will still be protected from disclosure to third parties.
Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.