Expert Video - How will I find out about the results of a clinical trial and will my information be kept confidential?
Physicians discuss how patients can find out the results of a clinical trial that they participated in, how results for the larger group of patients are announced, and that individual patient information is always kept confidential. Clinical trial results can be made available to the general public and patients in a number of ways, such as at big scientific meetings, or in journal publications. The goal is to let as many people know as possible and to enhance knowledge sharing amongst the oncology research community to stimulate further ideas and clinical trials. Announcing results often happens when clinical trials are completed and an update will be put on the clinicaltrials.gov website. Occasionally a study will reach an end point and researchers may have to close the study early. As for patient privacy, patients will sign a disclosure that acknowledges that the study team looking after them will have access to their information, however individual information is never shared outside the trial without patient consent. Often the institutional review board (IRB) will have oversight, as well as the company or agency that's funding the trial. The Federal Drug Authority (FDA) can also have access to the information, as well as certain collaborating sites if they are involved in the clinical trial. All of this information should be provided up front to patients and is part of the informed consent process. There are many safety measures in place to protect confidential (also called “Privileged”) information as much as possible.
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This educational activity has been developed by:
The National Pancreas Foundation and Mechanisms in Medicine Inc.
This educational activity is supported by: AbbVie, Akcea Therapeutics, Boston Scientific, Celgene, Ethicon, and Incyte.
This website is part of the Animated Patient™ series developed by Mechanisms in Medicine Inc., to provide highly visual formats of learning for patients to improve their understanding, make informed decisions, and partner with their healthcare professionals for optimal outcomes.