Privacy Pledge

Protecting the privacy of participants and the confidentiality of the information you’ve so generously donated is paramount.To that end, there are several safeguards in place to ensure no participant can be identified by researchers who are granted access to the research database. Health data in the custody of ABCD study will be stored separately from identifying information such as a participant’s name or Alberta Health Care number. Each recruit is assigned a random but unique code number that will never be revealed to an outside researcher or organization. Further, data that are collected by researchers for study will be coded. Such de-identification measures remove details that could identify an individual participant.

The ABCD team are trained in the ethical and privacy obligations involved in the use of data provided to us during the course of the study. Only research proposals that pass our rigorous scientific standards, along with ethics approval and review by peer researchers from established academic or research institutions, shall be granted access to the valuable database.

Successful candidates must sign a research agreement – a legally binding contract – before data or biological samples are released. Scientists unable or unwilling to comply with our privacy and confidentiality regulations on behalf of participants will be refused access.
No insurance company, employer, or other organization will have access to your identifying information under any circumstances.
For more information on who has access to your data, and how we safeguard your privacy, see our participants’ common questions section.