Your data in a study

Taking part in research means sharing information about your health. You are entitled to know exactly what, with whom and for how long.

What a study records

Each study keeps the information it needs to answer its question: test results, measurements, answers to questionnaires, side effects and sometimes samples such as blood or tissue. The consent form lists what will be collected. If something on it surprises you, ask why it is needed.

Who sees it

Your name stays with the research site. The information sent on to the study’s sponsor is usually labeled with a code instead, so the people analyzing it do not know who you are. A small number of others may look at your records to check the study is being run properly, such as auditors, the ethics board that approved it and, for studies of new medicines, the Food and Drug Administration.

• U.S. health privacy law applies to the records a research site keeps
• You will be asked for separate permission before your records are used for research
• Published results never name individual volunteers
• You can ask what has been recorded about you

Samples and future research

Some studies ask to keep leftover samples or data for future research. This is often a separate box on the consent form, and you can say no to it while still joining the study. Ask how long samples are kept, whether genetic tests will be run on them and whether you can ask for them to be destroyed later.

If you leave

When you leave a study, no new information is collected about you. Information gathered before you left is usually kept, because removing it could make the results unreliable. The consent form explains the rules for that study.

And your information with Origin

Origin holds only the details you give us when you sign up, and never your medical records. Our Privacy policy sets out how we keep them and how to have them deleted.