Medical records are private and confidential, including those about your involvement in a clinical trial. Health professionals directly involved in y our care or study can access your personal and medical information, but only if it’s necessary for their work. They can’t give any information about you to others unless it is relevant to your health care or the study.
Clinical trials and other research studies collect personal data about you. The participant information may mention who will and won’t have access to your personal data. You might be asked to consent to the research team seeing your existing medical records or particular test results.
Information collected during the study is often de-identified. In most cases, this means that your name will be removed and replaced with a unique participant number so your identity cannot be revealed unless necessary, e.g. for safety reasons. Being de-identified means when the results are published in medical journal articles or discussed at medical conferences, you will not be named.
At the end of a clinical trial, all personal information is stored in a secure place for at least 15 years before it can be destroyed. This is a legal requirement. If you have questions or concerns about your privacy in a clinical trial or other research study, talk to the clinical trials or research nurse.