Have you already participated? Make sure your contact information is up to date so we can stay in touch.
CARTaGENE’s strength rests above all on your commitment. By choosing to take part and share a part of yourselves, you make possible ambitious, rigorous health research focused on the collective good.
Every contribution matters. Together, these individual actions form a valuable resource that helps deepen our understanding of the factors that influence health—today and for generations to come.
people share their data
This enables the generation of thousands of health variables to answer real‑world research questions.
research teams have access to the data
And dozens of students are trained in research—creating impacts on the science of today and tomorrow!
Contact the CARTaGENE‑CHUSJ Unit () to update your record and stay in touch.
All consent forms and questionnaires are available on the portal.
Participants’ personal data are stored at the CARTaGENE–CHUSJ unit in a secure environment. They are not accessible to the CARTaGENE scientific team and are never shared with anyone.
Health data used in research projects are coded, meaning that information that could identify participants is replaced with codes. Each project receives a distinct code, which means that two researchers working with the same data will receive differently coded datasets.
Data are stored on secure servers managed by CARTaGENE and are shared with researchers only through a secure link, once their project has been approved.
Data and biological samples may be made available to researchers from the public or private sector, but only as part of a health research project that has received:
• ethics approval;
• approval from the CARTaGENE Access Committee.
Yes. Health follow-ups organized by CARTaGENE are open to all participants, regardless of where they live.
However, some initiatives conducted by external partners may be limited to individuals living in Quebec (for example, NutriQuébec).
Your data are essential for advancing health research.
You can consult the following resources to learn how CARTaGENE data are used:
CARTaGENE is actively working to secure funding to resume this type of data collection.
Updates will be announced on the website as soon as possible. Stay tuned!
There is no age limit for remaining a participant in the study.
If you are no longer able to actively participate (for example, by completing questionnaires), you can still remain in the cohort. Your health status can then be followed using administrative health data.
If you have questions or difficulties with a study questionnaire, the CARTaGENE-CHUSJ unit can help.
By phone: 1-877-263-2360
By email:
Some studies target specific groups of participants (for example, based on age, sex, or certain health characteristics). In such cases, only individuals who meet the study criteria receive an invitation.
If the study is a general follow-up and you did not receive an invitation, your contact information may no longer be up to date. The CARTaGENE-CHUSJ unit can review this with you.
By phone: 1-877-263-2360
By email:
Recruitment is currently closed. CARTaGENE is seeking funding to open a new recruitment phase.
Any updates will be announced on the CARTaGENE website. Stay tuned!
You may withdraw from the CARTaGENE study at any time.
Two options are available:
For any request, the CARTaGENE Unit can assist participants.
By phone: 1-877-263-2360
By email:
Please consult the initiatives page. It includes information on past and ongoing initiatives.
For health data to be used in research projects, they must be collected in a standardized way. The best way to inform CARTaGENE of a change in your health status is to respond to health follow-ups when they are sent to you. It is not necessary to report individual changes between follow-ups.
At this time, it is not possible to access the results of analyses conducted on biological samples. The consent form signed at the time of recruitment specifies that individual results are not returned to participants.
However, CARTaGENE recognizes the growing interest in communicating research results. Work is underway, in collaboration with specialized partners, to explore and develop responsible practices for communication and result sharing.
The CARTaGENE team greatly appreciated its collaboration with the Centre of Excellence on Partnership with Patients and the Public (CEPPP) during the CARTaGENE Symposium held in October 2024. Building on this experience, reflection is underway to further integrate the perspectives of cohort participants into research orientations and practices, with a view to strengthening transparency and collaboration.
This approach aims in particular to evolve practices related to the return of research results and to support key steps, such as data collection campaigns. The overall objective is to move CARTaGENE toward a more participatory and inclusive research model.
