MONTREAL, May 18 /CNW Telbec/ - The CARTaGENE Project, one of the largest
health and genomics projects ever carried out in Quebec, seeks to recruit
20,000 people to participate in Phase A of its wide-ranging study on the
determinants of health (lifestyles, genetics, environment and nutrition) of
Quebecers.
The resulting resource will consist of a biospecimen bank and a health
database. Upon request, the data collected by CARTaGENE will be made available
in coded form to researchers who meet the project's scientific and ethical
standards. Coded information drawn from government health data will also be
available.
CARTaGENE will make possible a wide range of studies that could improve
our understanding of health and the origin of disease and, in the medium and
long term, allow us to develop more appropriate interventions and more
accurate diagnostics and prevention tools.
Potential participants will be randomly selected by the Régie de
l'assurance maladie du Québec. In the coming days, those selected will begin
receiving letters inviting them to participate. Naturally, they are free to
accept or decline the invitation. The selection process will continue over
several months.
"The success of this project depends upon participant response," said Dr.
Claude Laberge, CARTaGENE's scientific director and official spokesperson. "We
would like to thank everyone who took the time to participate in our pilot
project last winter. It is thanks to them that CARTaGENE can begin Phase A of
its recruitment drive."
Phase A will start in June 2009. When participants visit a CARTaGENE
recruitment site, they will answer a health questionnaire and provide urine
and blood samples. A portion of the samples will be analyzed. The remainder
will be stored at the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC). Qualified and
specially-trained nurses will guide them through the process. They will also
take physical measurements including height, weight, waist and hip
circumference, blood pressure and pulse. Participants will also be invited to
assess their experience by filling out a satisfaction questionnaire at home.
On average, active participation will take two and a half hours. Participants
will also be asked whether they agree to be contacted again, and whether they
wish to participate in CARTaGENE's genealogical option, in association with
the BALSAC Project, by filling out a questionnaire at home.
Targeted regions
"Our objective is to create a public resource for research," according to
Dr. Laberge. "We are targeting people between 40 and 69 who live in the
greater Montreal, Sherbrooke, Saguenay (Chicoutimi) and Quebec City areas. By
reaching our goal of 20,000 participants over the next months, we will have a
resource that will give us a good portrait of the Quebec population's health
status and genetic diversity."
Coded samples guarantee confidentiality
"We are most proud of the fact that participant confidentiality will be
guaranteed through every stage of the project," added Dr. Laberge. "No name,
address, telephone or cell phone number, or email address will be stored in
the CARTaGENE database. Codes will replace this personal information. Access
to coded data and samples will only be provided to researchers who receive
necessary approvals from the ethics and scientific committees. At no time will
insurance companies or employers be allowed to access CARTaGENE data or
samples."
Team project
Many public institutions, organizations and projects are actively
involved in the CARTaGENE Project. The Université de Montréal is responsible
for the entire project. Financial support for genome research is provided by
two public organizations, Genome Canada and Genome Quebec. The Genome Quebec
and Centre hospitalier affilié universitaire régional de Chicoutimi Biobank
(GQ-CAURC) is responsible for sample storage. The Régie de l'assurance maladie
du Québec (RAMQ) is involved in the selection and recruitment of participants.
The BALSAC Project of the Université du Québec à Chicoutimi (UQAC) will retain
genealogical information and keep it confidential.
CARTaGENE has a national scope, thanks to its association with the
Canadian Partnership for Tomorrow Project (CPTP), which has the goal of
creating a research resource of 300,000 participants from across Canada.
CARTaGENE also has an international scope as a member of the Public
Population Project in Genomics (P3G), which coordinates collaboration between
25 similar projects around the world.
IMPORTANT
Consult the Press Room (Press Files) on www.cartagene.qc.ca to obtain :
Recruitment overview
Flow chart of participant
Structure of CARTaGENE
List of visual content
Partners
History and biographies
From an idea...
Dr. Claude Laberge initiated the idea of the CARTaGENE Project in 2000.
His ambitious vision was to create a biobank of urine and blood samples and a
database. The ultimate goal of the project was to facilitate and accelerate
health and genetics research on the population of Quebec. The project's
concept gradually evolved into its final form a few years later.
...to reality
On May 22, 2007 in Montreal, CARTaGENE announced its project financing at
the Human Genome Organization's 12th International Conference on the Human
Genome. The press conference was held jointly with Canada Economic Development
(CED), the Ministère du Développement économique, de l'Innovation et de
l'Exportation du Québec (MDEIE), Genome Canada, Genome Quebec, the Université
de Montréal (UdeM) and the Public Population Project in Genomics (P3G). A few
months later, financing for the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC Biobank) was announced.
The biobank will provide the storage infrastructure for CARTaGENE's blood and
urine samples.
Optimization Phase
In January and February 2008, CARTaGENE recruited 223 people from a list
of randomly-selected names from Régie de l'assurance maladie du Québec (RAMQ)
files. This first recruitment phase targeted the Montreal, Montérégie and
Sherbrooke areas. Qualified nurses collected urine and blood samples, took
physical measurements and gathered information on the health status of
participants. The contribution of these first volunteers allowed CARTaGENE to
fine-tune its recruitment and collection methods, tools and instruments.
Harmonization
In 2008, CARTaGENE and P3G joined forces to match their methods and tools
with those of similar projects internationally. This process, called
harmonization, brings together many populational genome projects around the
world. With harmonization comes the possibility of sharing data for
large-scale statistical analysis. In 2008, CARTaGENE also joined the Canadian
Partnership for Tomorrow Project (CPTP), which has the goal of creating a
research platform that combines cohorts like CARTaGENE's from five provinces.
Recruitment
In May 2009, CARTaGENE will begin its main recruitment phase (Phase A)
with the objective of creating a biobank and database containing samples and
data from 20,223 individuals by 2010. This phase culminates many years of hard
work assessing and improving the project's scientific, ethical and governance
frameworks.
Biography of Claude Laberge
Claude Laberge is Professor of Medicine and Pediatrics in the Faculty of
Medicine at Université Laval in Quebec City. His scientific interests and
publications are in the fields of genetic screening, genetic epidemiology and
policy, and founder effects in demographic genetics, especially with regards
to hereditary tyrosinemia type I and myotonic dystrophy. He is an associate
researcher at the Public Law Research Centre (CRDP) of the Université de
Montréal where he collaborates with Professor Bartha Maria Knoppers and her
team on research projects involving various ethical and sociological issues of
genetic epidemiology, notably the consent to DNA sampling.
Claude Laberge obtained his M.D. from the Faculty of Medicine of
Université Laval in 1962. From 1962 to 1964, he did his residency in
Pediatrics at The Hospital for Sick Children in Toronto. In 1968, he received
a Ph. D. in Human Genetics from Johns Hopkins University for his thesis,
Genetic Studies in French Canadians, under the direction of Professor Victor
A. McKusick. He passed the exams in Pediatrics for Fellowship in The Royal
College of Physicians and Surgeons of Canada and Quebec's Collège des Médecins
in 1967-1968.
He founded the Department of Clinical Genetic Medicine in the Department
of Medicine of the Université Laval Medical Centre (CHUL), which he headed
from 1969 to 1994. He was Chief of Medicine at CHUL from 1975 to 1980. In
1969, with Professors Charles R. Scriver of McGill University and Didier
Dufour of Université Laval and Carol Clow of the Montreal Children's Hospital,
he founded the Quebec Network of Genetic Medicine. He was President of this
organization until its dissolution by Quebec's Ministère de la Santé et des
Services sociaux in 1994. The network was responsible for systematic neonatal
screening by blood and urine samples on filter paper. From 1993 to 2004, he
was the President of the Réseau de médecine génétique appliquée (RMGA; Network
of Applied Genetic Medicine) of the Fonds de la recherche en santé du Québec
(FRSQ; Quebec Health Research Fund). He founded the CARTaGENE Project in 2000.
Biography of Bartha Maria Knoppers
BARTHA MARIA KNOPPERS, Ph. D., O. C., Canada Research Chair in Law and
Medicine and Chaire d'excellence Pierre de Fermat (France) (2006-2008). She is
also Professor in the Faculty of Law and Senior Researcher at the Centre for
Public Law (CRDP) at Université de Montréal.
She served as Chair of the International Ethics Committee of the Human
Genome Organization (HUGO) from 1996 to 2004 and from 1993 to 1997, was member
of the UNESCO International Bioethics Committee, which drafted the Universal
Declaration on the Human Genome and Human Rights. She is also the co-founder
of the International Institute of Research in Ethics and Biomedicine (IIREB)
and a researcher with the Quebec Réseau de médecine de génétique appliquée
(Network of Applied Genetic Medicine; RMGA). From 2000 to 2006, she served on
the board of Genome Canada and the Canadian Stem Cell Network. In 2003, she
was named Chair of the Ethics Working Party of the International Stem Cell
Forum. In 2003, Bartha Maria Knoppers became founder and Chair of the
international Public Population Project in Genomics (P3G) and Principal
Investigator of CARTaGENE.
Bartha Maria Knoppers has received honorary doctorates in law from the
University of Waterloo, Université Paris V (Paris Descartes), McMaster
University and the University of Alberta. In February 2002, she was elected
Fellow of the American Association for the Advancement of Science and in May
2002 was named Officer of the Order of Canada and received the Queen's Jubilee
Medal.
In 2003, she was elected Fellow of The Hastings Center (Bioethics), New
York, and member of the International Ethics Committee of WADA. The Canadian
Academy of Health Sciences (CAHS) elected her Fellow in April 2005. She is a
Governor and Advocatus Emeritus of the Quebec Bar.
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