Participants

What is CARTaGENE?

CARTaGENE is a research platform of the CHU Sainte-Justine aiming to accelerate health research. CARTaGENE consists of a biobank (repository of biological samples) and a health database.

What is a biobank?

A biobank is an organized set of biological samples stored in a systematic manner  to be used for research projects. The CARTaGENE Biobank is kept within the Génome Québec Biobank facility in Saguenay.

How is CARTaGENE helping research?

The CARTaGENE Database and Biobank are unparalleled research resources of great scientific value. Detailed information on health, lifestyle and exposure to environmental risk factors can be used in combination with a wealth of information obtained from banked biological samples, including genome sequencing to better understand health and disease.

Who can participate in CARTaGENE?

The recruitment is now completed and it is not possible to volunteer at this time. Individuals invited to participate in CARTaGENE were randomly selected to be representative of the Quebec population aged 40 to 69 years.

How can I make a complaint?

Any complaints about CARTaGENE can be addressed to the Commissaire aux plaintes CHU Sainte-Justine by phone 514 345-4749 or by mail to:

Commissaire aux plaintes et à la qualité des services
CHU Sainte-Justine, pièce A111 et 1209
3175, Côte-Sainte-Catherine
Montréal (Québec) H3T 1C5.

How to withdraw from CARTaGENE?

Participants are entirely free to participate or not in CARTaGENE and to withdraw at any time. Participants may at any time request that their name be removed from the list of registered participants on the portal. This will not cause the destruction of data and biological samples collected by CARTaGENE. To withdraw, participants have to communicate with the Unité CaG-CHUSJ at 1-877-263-2360 (toll-free).

Participants can also request the destruction of their data and biological samples. Data and biosamples will not be destroyed after a participant’s death, unless clear instructions to this effect are mentioned in a will.

Who can access the data?

CARTaGENE is designed to prevent data access by insurers and employers. Only researchers who received scientific and ethical approvals can have access to data.

Participants’ data are protected by codes which ensure confidentiality. CARTaGENE has mechanisms and robust IT security architecture compliant with international norms and standards on the best information security practices. Samples in the biobank are protected against unauthorized use by mechanic and electronic systems. In addition, all Génome Québec Biobank and CARTaGENE employees have signed confidentiality agreements.

Researchers

What is CARTaGENE?

CARTaGENE is a research platform of the CHU Sainte-Justine specially designed to facilitate the emergence of new research projects and new health care knowledge. CARTaGENE consists of a biobank and a health database.

What type of data is available?

CARTaGENE has various features that researchers can consult to learn more about the available data. These are the data catalog and aggregate data.

How can I request access to the data?

To apply for access to CARTaGENE data and/or biosamples, please go to the SDAS portal and follow the instructions. You will need to register to create an account before you can complete the application form. Please note that a proof of research ethics committee approval, research protocol, proof of funding and a short CV will be requested as part of the application package.

Who can apply for access?

CARTaGENE is a public research platform and any researcher working in a public institution (academic or governmental) or in a private organisation may apply for access to data and biosamples. Use of the CARTaGENE data and/or biosamples is NOT restricted to Canadian researchers.

Which projects have used CARTaGENE data and/or biosamples?

Please consult our project list to obtain more information about studies using CARTaGENE data and/or biosamples.