Why participate in CARTaGENE?

To help build a unique, large-scale public resource for biomedical research.

To contribute to the advancement of knowledge in health and genomics, possibly leading to more precise diagnoses and better treatments, as well as disease prevention and health promotion programs.

To create a scientific tool that will enable researchers to conduct more in-depth and powerful analyses for studies on health in Quebec.

In what geographical area of Quebec will recruitment take place?

During Phase A, individuals will be randomly selected from the Montreal, Sherbrooke, Quebec City and Chicoutimi (Saguenay) metropolitan census regions.

Who can participate in the CARTaGENE project?

It is not possible to volunteer to participate.

Individuals invited to participate in the CARTaGENE project are randomly selected to establish a databank and biobank that is representative of 40 to 69-year-old Quebecers, healthy or not.

Randomly selected individuals will be free to decide whether or not they will participate.

What can a participant do if she/he wants to end her/his participation in the CARTaGENE project and extract her/his information from the CARTaGENE databank and biobank?

As a participant, you are completely free to participate or not in the CARTaGENE project and you can end your participation at any time.

You can do this by simply calling the CARTaGENE Service of the Régie de l’assurance maladie du Québec (CaG-RAMQ Service) toll-free at 1-877-263-2360 . CARTaGENE will be informed of the withdrawal.

Data and biological samples from a participant that has withdrawn from the project will no longer be accessible to researchers via the CARTaGENE bank. However, data and samples that have already been used by researchers cannot be withdrawn from current or completed studies.

The death of a participant does not automatically mean his/her withdrawal from CARTaGENE. His/her data will continue to be part of the CARTaGENE bank and can be used for research projects.

How will I know if I have been selected to participate in the CARTaGENE project?

Selected individuals will receive a letter of invitation in the mail, asking them to participate in the CARTaGENE project.

The CARTaGENE logo will appear on the upper left hand corner of the envelopes sent out. Inside will be a brochure explaining what participation involves.

The CARTaGENE Service of the Régie de l’assurance maladie du Québec (CaG-RAMQ Service), a governmental organization, will contact the randomly selected individuals.

Do I have to participate?

During all phases of CARTaGENE, the contacted individuals will be free to decide whether or not they will participate.

What does the appointment with the nurse (or the interviewer) entail?

The appointment with the nurse and sometimes with an interviewer takes place at a collection site located in a hospital or Local Center for Community Services (Centre local de services communautaires, CLSC).

The nurse or the interviewer first welcomes the participants, then explains the CARTaGENE project and answers any questions.

The participants will be offered two additional options: whether or not they wish to be re-contacted in the future for further research projects using the CARTaGENE banks, and whether or not they wish to fill in a genealogy questionnaire.

The participant then signs the consent form, and chooses whether or not to participate in the options. The form is in electronic format. A copy of it is printed and given to the participant.

The nurse or interviewer then offers the participant the choice to watch a video on the CARTaGENE project.

The nurse takes a number of measurements and collects urine and blood samples. The nurse or the interviewer also asks a series of questions relating to the health, family medical history and lifestyle of the participant.

The duration of the meeting with the nurse and the interviewer is about two and a half hours.

Are participants paid for their contribution to CARTaGENE?

Participation in CARTaGENE is not remunerated.

Participants are given a compensation of $45 for time spent travelling to the appointment and to participate in the project. This amount will be given to the participant at the end of the appointment with the nurse.

What are the personal benefits for participants in the CARTaGENE project?

Participation is primarily a gesture of solidarity and altruism. No immediate benefits will be obtained from participating in the CARTaGENE project.

Participants will receive the results of certain physical measurements, such as height, weight, hip and waist circumference, grip strength, sitting height, body fat percentage, body mass index, blood pressure, bone density and lung capacity etc.

These tests are not a substitute for a complete physical check-up and do not constitute a full physical or health report for the participant.

What types of information are asked in the Health Questionnaire?

The major themes covered by the CARTaGENE health questionnaire are listed below.

Socio-demographic characteristics: sex, place and date of birth, citizenship, residential history, parents’ and grandparents’ birthplace, language, marital status, education level, income, work, professional history.

Behaviour and lifestyle, such as: smoking, alcohol and food supplements, eating habits, physical activity levels, sleep, and sunlight exposure.

Personal and familial histories concerning illness or health problems, including mental health problems (anxiety, depression).

Evaluation of mental health status (anxiety, depression).

Evaluation of the psychosocial environment (stress in daily life and in the work place, social support).

Medical care, such as major surgery.

Use of healthcare services (physical check-up or screening).

Medication (prescription drugs, non prescription drugs and food supplements).

Women’s health (menstruation, contraception, pregnancy, breastfeeding, menopause).

What physical measurements will be taken by the nurse?

The following measurements will be taken:

Weight
Height
Waist and hip circumference
Bioimpedance (body fat percentage, cellular composition)
Heart frequency
Blood pressure
Spirometry (lung capacity)
Hand grip
Bone density
Partial electrocardiogram
Arterial stiffness
Sitting height
Evaluation of the cognitive functions

Are there physical risks involved in participating in the CARTaGENE project?

Physical risks associated with participation are minimal.

The drawing of blood will sometimes cause bruising, a painful sensation or, in rare cases, loss of consciousness.

The pulmonary function test may provoke fatigue that can cause dizziness or, in rare cases, loss of consciousness. It is not recommended for participants suffering from a cold, the flu or bronchitis.

The bone density test is not recommended for participants who have lesions or open sores on their feet.

The other physical measurements performed during the appointment with the nurse are without known physical risk.

Participants who have a pacemaker and participants who are pregnant will not take part in the bioimpedance measures. These measurements determine the percentage of body fat.

How can participants obtain information about the CARTaGENE project?

Participants who have specific questions regarding participation and data collection can contact the CARTaGENE Service of the Régie de l’assurance maladie du Québec (RAMQ) ( 1-877-263-2360).

Participants and members of the general public can obtain information on CARTaGENE via the website www.cartagene.qc.ca, where there is also a short video about the project.

How can participants lodge a complaint regarding the CARTaGENE project?

Any complaint from a participant regarding the CARTaGENE project can be addressed to the Université de Montréal Ombudsman at (514) 343-2100 or at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it (The Ombudsman accepts collect calls.)

How will the public be kept informed of the CARTaGENE project’s progress?

At any moment, general information may be obtained on the CARTaGENE project by visiting the website at www.cartagene.qc.ca or by sending an email to This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Various communication tools will be developed to inform the public on the evolution and progress of the CARTaGENE project.