How your privacy and data are protected

In a study, your personal information is handled with care and rules. Here is a plain-language look at how your privacy is meant to be protected.

Your information is kept private

The team should keep your personal details protected and share them only with people who need them for the study or for your safety.

Your name is usually replaced with a code

In research records, your name is often replaced with a code number. This is called coding or de-identification, and it helps keep who-you-are separate from your study data.

You can ask what is collected

You have a right to ask what information is being collected, why, how long it is kept, and who it may be shared with. The consent process should explain this before you agree.