The following was written by CARTaGENE:
MONTREAL, Dec. 1 - During the CARTaGENE discussion forum held in Montreal today, scientific director Dr. Claude Laberge, unveiled the first statistical results for one of the greatest scientific projects on population health and genomics ever realised in Quebec.
"Since the middle of the 2009 summer, nearly 3,000 Quebec residents out of our 20,000 participants target for Phase "A" have chosen to take part in a vast study on health determinants (lifestyles, genetics, environment, nutrition) in Quebec. We have now attained 15% of this objective, which we will reach in 2010 by increasing the number of sites in the targeted regions. I wish to offer my sincerest thanks to the 3,000 individuals who have already taken the time to contribute to our project. The whole CARTaGENE team is very grateful."
This resource for research will consist of a biobank and a health information database. Upon request, CARTaGENE will supply data and samples in coded form to researchers, provided they meet scientific and ethical criteria. Researchers may also gain access to coded information from government health databases, if needed.
CARTaGENE seeks to improve our understanding of health and of disease by accelerating the realisation of many studies or by making them possible, and, in the medium to the long term, allow for better adapted interventions, as well as more accurate diagnostics and prevention.
The CaG-RAMQ Service (an office set up by the Régie d'Assurance Maladie du Québec and CARTaGENE) randomly selects potential participants from four of the census metropolitan areas in the province of Quebec. Selected individuals then receive an invitation letter inviting them to participate in CARTaGENE. They are free to accept or decline. This selection process is ongoing and will last many more months.
The Importance of Participation
"The success of this study depends on the response of participants says Dr. Claude Laberge, CARTaGENE'S Scientific Director and official spokesperson. "We wish to thank the 3,000 individuals who have taken the time to participate in phase A of recruitment since last summer. We also invite everyone who receives an invitation from the CaG/RAMQ Service to sign up and actively take part in this important research.
Participants going to recruitment sites will be asked to complete a health questionnaire and to give a sample of urine and blood, a fraction of which will be used for analyses, while the remaining samples are stored in the GQ-CAURC Biobank. Specially trained registered nurses will accompany them through every step of the process. They will take some physical measurements, such as height, weight, waist and hips circumference, arterial pressure, and pulse. Following the measurements and interview, participants will be given a questionnaire evaluating their satisfaction, which they may fill out at home. This concludes the "active" participation part of the study, and lasts two and a half hours on average. Participants are also invited during the consent process to indicate if they want to be contacted again or if they wish to participate in the CARTaGENE genealogical option, in association with the BALSAC Project, by answering another questionnaire at home.
"Our objective is to create a public resource for research projects," says Dr. Laberge. "We are targeting people aged 40 to 69 living in the Montreal, Sherbrooke, Saguenay (Chicoutimi) and Quebec City metropolitan areas, in proportion to their respective populations. By reaching our goal of 20,000 participants in 2010, we will be able to create a resource allowing us to establish a good portrait of the Quebec metropolitan population's health and genetic diversity."
Confidentiality Guaranteed by Coded Samples
"We are most proud of the fact that participant confidentiality is guaranteed every step of the way," adds Dr. Claude Laberge. "No name, address, cell or telephone number, or email address will be stored in the CARTaGENE database. Personal information will be replaced by codes. Access to coded data and samples will only be granted to researchers who received the required authorisations from the ethics and scientific committees. At no time will insurance companies or employers be allowed to access CARTaGENE data or samples."
The Importance of teamwork
Many public institutions, organisms and projects are actively involved in the CARTaGENE project. The Université de Montréal is responsible for the project as a whole. Financial support for CARTaGENE is mainly provided by Genome Canada and Génome Québec. The Génome Québec et Centre hospitalier affilié universitaire régional de Chicoutimi Biobank (GQ-CAURC Biobank) is in charge of sample storage. The Régie de l'assurance maladie du Québec (RAMQ) is involved in the selection and recruitment of participants.
The Université du Québec à Chicoutimi (UQAC) BALSAC Project will keep genealogical information and ensure its confidentiality.
CARTaGENE is a project of national scope, due to its association with the Canadian Partnership for Tomorrow Project (CPTP), which aims to create a research platform involving a cohort of 300,000 participants from across Canada.
CARTaGENE is also a project of international scope as a founding member of the Public Population Project in Genomics (P3G), which coordinates collaboration between more than 25 similar projects around the world.