Help

CARTaGENE Participant Portal

Is the health questionnaire available at any time?

Yes, the questionnaire is accessible at all times. However, as soon as you submit your answers, the survey will no longer be accessible. You can take note of the changes you wish to report (e.g. diseases, new medication), you will have the opportunity to inform us during the next health follow-up.

I didn’t receive an email following my registration in the portal, what can I do?

Following your first connection on the portal, you should receive an email verifying that the email address you provided is still valid.
If you have not received the verification email, you can
- Check spam in your email box (also known as "junk");
- Request that another validation email be sent from the login page;
- Call the recruitment firm Jolicoeur 1-866-366-4249.

How can I access the questionnaire? How can I change my answers?

To access the health follow-up questionnaire, log on to the portal and click on the green button “Health Survey” at the top of the page.
Upon confirmation of your registration into the portal, you can access the questionnaire at any time and make changes to your answers. However, once you have submitted your questionnaire you will no longer be able to make any changes.

How can I change my contact information (email, address, phone number, and password?

The portal allows you to change your address, telephone number, email and password only when you have logged in at least once.

To change your:
Email: When logged in, click on the drop down menu (down arrow) from the blue button at the top right and click on “Update Email”. Type your new email address in the box. Remember this email, you will need it to connect to the portal.
Password: When logged in, click on the drop down menu (down arrow) from the blue button at the top right and click on “Update Password”. Type your current and new passwords. Memorize your new password.
Mailing address and phone number: When logged in, click on the drop down menu (down arrow) from the blue button at the top right and click on “My Profile”, go to the "Contact Information" and make the desired changes. Click on the green button "Save" at the bottom of the page.

For further information, please read the user guide.

How can I unsubscribe from the CARTaGENE newsletters?

If you wish to stop receiving newsletters, log on to the portal, click on the drop down menu (down arrow) from the blue button at the top right and click on “My Profile”. At the bottom of your profile page, you will find the “Preferences” section. Then, you can choose the options that best suit you.

I have been invited to a new study. How can I participate?

You first need to register to CARTaGENE participant portal. When logged in, you may access to the information of the study by clicking on the drop down menu (down arrow) from the blue button at the top right and selecting “Studies”. You may then access the study information by clicking on the green title ("Title and Description" Column) and, accept or decline at the bottom of the consent form. It is important to submit your consent.

This user guide will help you to access to the study information for which you have been invited. If you are still experiencing difficulties, you can contact the CaG-CHUSJ Unit at 1-877-263-2360.

How can I modify my name, date of birth or sex on the CARTaGENE portal?

You can NOT change your name, date of birth or sex that appear on the portal by yourself. To make changes to this information, you have to contact the CaG-CHUSJ Unit at 1-877-263-2360. A verbal confirmation of the change will be requested following a verification of your identity.

My email address doesn’t work, what can I do?

When you sign in for the first time on the portal, you must use the email address you provided to CARTaGENE during your initial enrollment. If it still doesn’t work, please call the CaG-CHUSJ Unit at 1-877-263-2360.

I have trouble using the portal, how can I get help?

This user guide will help you use the portal. If you are still experiencing difficulties using the portal, you can contact the CaG-CHUSJ Unit at 1-877-263-2360.

Data Access and Privacy Policies

How long will CARTaGENE keep my data?

CARTaGENE will keep data as long as the project exists. Data 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 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.

General Questions About the Study

Am I free to participate?

You are free to participate in follow-up surveys and other studies for which you have been invited. You may at any time request that your name be removed from the list of registered participants on the portal. This will not cause the destruction of data and biological samples collected since the beginning of your participation in CARTaGENE. If your name is removed from the participant portal, you will no longer receive invitations from CARTaGENE to participate in health follow-up surveys or any other studies of interest.

How can I withdraw from CARTaGENE?

You may request that your name be removed from the list of registered participants on the portal. If your name is removed from the participant portal, you will no longer be able to log in or receive invitations from CARTaGENE to participate in health follow-up surveys or any other study of interest.
You can also request the destruction of your data and biological samples.
To withdraw, you have to communicate with the Unité CaG-CHUSJ at 1-877-263-2360 (toll-free).

What are the benefits of participating?

There is no direct benefit for participants. However, participation in CARTaGENE can improve health knowledge through studies using CARTaGENE data and biosamples.

What are the disadvantages and risks of participating in CARTaGENE?

The main disadvantage of participating in the health follow-up is the time spent completing questionnaires.
Given the measures undertaken by CARTaGENE to protect the confidentiality of the data, the risk to their safety or privacy is minimized.

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