Your data privacy
Your privacy is important to us. The CopaQ project has been approved by the research ethics committee of the Université du Québec à Chicoutimi.
Data protection
Your data will be uploaded from your user account on the PULSAR platform which will be accessible only by you. Your data will be immediately coded and integrated into the CopaQ database as well as the BALSAC file (for genealogical data only if you opt for this component). The return of your personalized results will also be done from your user account. We will not share your data with other participants. You will need to electronically complete the consent form from your user account to ensure that you understand what your participation entails and that you consent to share your data with us.
You can review the privacy policies and data management frameworks of CopaQ, BALSAC and PULSAR as well as the ethics approval for the project.
High security area
Your electronically completed consent form and your user account login information will be stored in the high security area of PULSAR accessible to a limited number of people from the CopaQ project, i.e., Simon Girard, a research professional, and, exceptionally, by system administrators with the permission of the CopaQ project for system maintenance purposes.
Data encryption
Your genetic and demographic data will be coded and will not be combined with your personal information. The key will be kept in an encrypted file in the high security area of PULSAR. No individual genetic data will be shared. The data that will be published on the website or sent to researchers will be aggregated and coded data.
If you choose to provide your genealogical data, it will be kept in the high security area of PULSAR and securely transferred to the BALSAC project within 72 hours of entering your genealogical form.