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The Canadian Lifelong Health Initiative (CLHI) is a cross cutting initiative that is currently being developed by the Canadian Institutes of Health Research (CIHR):
The Institutes have come together to advance the CLHI because the scale, cost, degree of organization and multidisciplinary leadership and broad expected outcomes are beyond the scope and mandate of any single Institute. Furthermore, the proposed initiative would require large cohorts within the Canadian population as a whole, and within specific subpopulations, and would require an unprecedented degree of coordination and interaction across a spectrum of research communities.
The CIHR Research Priorities and Planning Committee (RPPC), part of whose mandate is to recommend the overall CIHR health research agenda including research priority initiatives and budget allocations to the CIHR Governing Council, have approved the development of the Canadian Lifelong Health Initiative.
The Canadian Lifelong Health Initiative (CLHI) is intended to facilitate the establishment of a research program to conduct large multi-centered longitudinal cohort studies of Canadians. These studies will analyze the role and interaction of different genetic and environmental exposures involved in the human development and aging processes over the life course, the multi-factorial causes and evolution of common diseases, and the utilisation of health care services.
The resulting infrastructure will help create a common research platform that will give Canadian scientists a unique advantage in allowing the conduct of original population studies, over decades, that will place Canada at the forefront of modern health research and help attract and retain the best investigators and trainees.
The platform will focus on both ends of life:
The Canadian National Birth Cohort (CNBC) - Most disease burden is jointly determined by interaction of individual genetic endowments and complex sequence of environmental factors that are manifested over the life course. An early birth cohort provides a powerful design for studying all "determinants of health" (bio / psycho-social / gene-environment) with prospective "real-time" measures - both environmental exposures and evolving health outcomes. A national birth cohort is being proposed, and will focus on the commonest genetically complex/multifactorial morbidities up to age 15-20, such as:
The Canadian Longitudinal Study on Aging (CLSA) - The CLSA will assemble a large and representative cohort of some 50,000 Canadians aged 40 and older to be followed for at least 20 years as they enter into the senior population over the next two decades. Ultimately, the CLSA will allow us to understand mechanisms underlying the process of aging; to understand the influence of various factors in relation to each other; and to distinguish aging from the effects of disease processes, cohort effects, and secular changes among seniors of today and tomorrow. The overall aim of the CLSA is to examine aging as a dynamic process. The CLSA will investigate the inter-relationship among intrinsic and extrinsic factors from mid life to older age, capturing transitions and trajectories that will allow us to clarify the concept of healthy aging.
The Canadian Lifelong Health Initiative will also explore linking the CLSA and CNBC in order to create a multigenerational cohort. This integration will create a more powerful tool for genetic analysis by allowing the assessment of trans-generational effects. The merged design will also result in a novel and unique study that will distinguish the Canadian Lifelong Health Initiative internationally.
Canadian Lifelong Health Initiative Activities to Date:
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June 2001 |
Inaugural meeting of the joint Priority and Planning Committee on "Population Genetics and Genetic Epidemiology of Complex Diseases" |
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The CIHR Institutes of Genetics and Population & Public Health met to discuss a joint initiative on population genetics and genetic epidemiology of complex diseases. | |
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September 2001 |
Strategic planning workshop: Human Population Genetics/Genomics Workshop |
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Genome Canada and the CIHR Institutes of Genetics and Population & Public Health jointly sponsored this one-day workshop. Approximately 30 individuals from a variety of institutions and organizations in the Human Population Genomics/Genetics community were assembled to participate in the workshop with the objective to address emerging scientific opportunities and long-term strategies for Canadian funding agencies in this field. | |
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November 2001 |
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Over 80 researchers and international experts participated in a two-day workshop in Aylmer, Quebec aimed at establishing objectives and discussing design issues for the CLSA. | |
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November 2001 |
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A Request for Proposals (RFP) was launched by the CIHR Institute of Aging for the development of the CLSA protocol. Nine other CIHR Institutes also supported the RFP. | |
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November 2001 |
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A CLSA Steering Committee was set up with the mandate to oversee the development and realization of the study. Membership in the Committee to date includes representatives from Health Canada, Statistics Canada, Canadian Association on Gerontology, Canadian Institute for Health Information, other CIHR Institutes and private industry. | |
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April 2002 |
Planning Workshop: "Population Platforms for the Study of Genes and Environments in Human Health, Over the Life Course" |
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A group of 13 national and international population genetics and genetic epidemiology experts met to discuss the possibilities and scientific feasibility for population-based studies of complex/multifactorial disease that are best suited for major planned investments in Canada over the next decade. | |
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June 2002 |
Follow-up Meeting: "Population Platforms for the Study of Genes and Environments in Human Health, Over the Life Course" |
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Building on the outcomes of the April 2002 meeting, a group of eight experts addressed the challenges and opportunities on how to best approach the study of complex/multifactorial disease and the format of the international workshop - the next key consultation step in this initiative. | |
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June 2002 |
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The CIHR Institutes of Genetics and Population & Public Health launched a Request for Applications (RFA) to invite applications to build research capacity in the area of population genetics and genetic epidemiology of complex diseases with important environmental co-determinants. This initiative will support individuals or teams to develop new theories, strategies and methodologies needed to facilitate more conclusive, high-quality etiological studies of such diseases. | |
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September 2002 |
RFA Launch "Facing our Future: Human Genetics, Ethics, Law and Society" |
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The CIHR Institutes of Genetics, Aging, Population & Public Health and the CIHR Ethics Office launched a Request for Applications (RFA) to invite applications to address ethical, legal and social challenges relevant to population-based genetic epidemiological research. | |
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Fall 2002 |
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The CIHR Institutes of Population & Public Health and Health Services & Policy Research, together with the Canadian Institute for Health Information, Canadian Population Health Initiative (CIHI-CPHI), Health Canada's Centre for Surveillance Coordination and Statistics Canada launched a Request for Proposals (RFP) to engage the services of a team of research consultants/contractor(s) to describe the current status of population-based health and health services databases in Canada that are being used and show the potential for use in innovative and important health research. | |
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October 2002 |
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After an international review, a research team led by three principal investiagtors; Drs. Susan Kirkland (Dalhousie University), Parminder Raina (McMaster University), and Christina Wolfson (McGill University), was chosen. More than 200 collaborators and co-investigators from across the country also supported the application and are participating in protocol development. | |
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February 2003 |
CNBC Design Workshop |
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Over 80 participants from across Canada and abroad took part in a design meeting in Toronto, Ontario. The meeting was held to discuss design issues, including sampling and accrual considerations, which genetically complex diseases and which environmental exposures will be studied (in general terms), ethical, legal and social issues, management and governance and funding. The major recommendation from the workshop was to examine ways of integrating the CNBC and CLSA to form a multigenerational cohort. | |
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April 2003 |
First Joint Meeting of the Canadian Lifelong Health Initiative |
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An ad hoc steering committee meeting of the Canadian Lifelong Health Initiative was held in order to promote further understanding among participants of the CNBC and CLSA and to explore common design issues and other areas of joint interest in relation to both studies. | |
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May 2003 |
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An audience of close to 100 people gathered in Ottawa for the announcement by the Honourable Sharon Carstairs, Leader of the Government in the Senate and Minister with Special Responsibility for Palliative Care, of the funding for the development of the protocol for the Canadian Longitudinal Study on Aging (CLSA). | |
| June 2003 | Results of the CIHR Request For Proposals (RFP) "Population Based Health and Health Services Data in Canada: Current Status and Future Health Research Potential" |
| The CIHR - Institute of Population and Public Health (Co-Lead) and Institute of Health Services and Policy Research (Co-Lead), in collaboration with the Canadian Institute for Health Information, Canadian Population Health Initiative, Health Canada's Centre for Surveillance Coordination, Statistics Canada, Institute of Aboriginal Peoples' Health, Institute of Aging, Institute of Circulatory and Respiratory Health, Institute of Genetics, Institute of Gender and Health, Institute of Infection and Immunity, Institute of Musculoskeletal Health and Arthritis, Institute of Nutrition, Metabolism and Diabetes, Institute of Neurosciences, Mental Health and Addiction and the Institute of Cancer Research, jointly announced the results of the competition. | |
| August 2003 | Results of the "Novel Population Genetic and Genetic Epidemiological Methods for Studies of Complex Genetic Diseases" competition |
| The CIHR Institutes of Genetics (IG) and Institute of Population and Public Health (IPPH) announced the results of the competition under the strategic initiative on "Novel Population Genetic and Genetic Epidemiological Methods for Studies of Complex Genetic Diseases". Launched in June 2002, the program was designed to build research capacity in the area of population genetics and genetic epidemiology of complex diseases with important environmental co-determinants. | |
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Fall 2003 |
Priority Announcements: Population Genetics |
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The CIHR Institutes of Genetics and Population & Public Health will take part in the Fall 2003 CIHR open competitions with priority announcements to fund fellowships and doctoral research awards to support young investigators in the area of population genetics and genetic epidemiology of complex diseases. | |
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Fall 2003 |
Establishment of the CLHI Advisory Committee on Ethical, Legal and Social Issues (ELSI) |
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A committee of ethical, legal and social issues (ELSI) experts was struck with the mandate to advise the Scientific Directors leading the CLHI on actions and best practices to address ELSI relevant to the CLHI. | |
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November 2003 |
Legal and Ethical Issues facing the Canadian Lifelong Health Initiative Workshop |
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A workshop was held to invite legal experts, federal and provincial government representatives and researchers from across the country to specifically focus on a practical analysis of legal and ethical policies currently in place in Canada and their effect on the proposed CLHI. The objectives of this planning workshop were to:
Agenda Participants | |
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December 2003 |
Appointment of a CLHI Ethics Policy Advisor |
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The CLHI Ethics Policy Advisor, Mylène Deschênes, was appointed to a term position with CIHR to coordinate a three-year project to address Ethical, Legal and Social Issues (ELSI) related to the Canadian Lifelong Health Initiative (CLHI). The position will involve working with the CIHR Ethics Office to support the Scientific Directors leading the CLHI. Mylène Deschênes studied law at McGill University and has a Master of law in the field of law, biotechnology and society. Before joining CIHR, she was Research Associate and Projects Director at the Centre de recherche en droit public, University of Montreal with the team of Bartha Knoppers. Her work focused on population genetic research, public health and privacy issues, and the governance of biomedical research. She has published various articles in the area of research ethics and is one of the authors of the Statement of Principles on the ethical conduct of Human Genetic Research (2000). For the past 2 years, she was also a lecturer at the Faculty of law of University of Montreal. | |
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December 2003 |
RFA Launch "Facing our Future: Human Genetics, Ethics, Law and Society" |
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The CIHR Institutes of Genetics, Aging, Human Development, Child & Youth Health, Aboriginal Peoples' Health and Population & Public Health and the CIHR Ethics Office launched a Request for Applications (RFA) to invite applications to address ethical, legal and social challenges relevant to population-based genetic epidemiological research. | |
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March 8-9, 2004 |
Multigenerational Canadian Birth Cohort Design Workshop |
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A follow up workshop will be held for the birth cohort study to focus on specific study design questions, building on the outcomes of the February 2003 design workshop, Legal and Ethical Issues facing the Canadian Lifelong Health Initiative Workshop and ongoing consultations with the research community. The objectives of the workshop are to bring together experts in fields including epidemiology, developmental biology, genetics and environmental health in order to discuss the opportunities and challenges for the design of a multigenerational birth cohort study in the context of several other international birth cohorts now being conducted, and to reach consensus and make recommendations on selected aspects of the most appropriate design. | |
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March 10-11, 2004 |
International Review of the Final Draft of the CLSA Protocol |
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A meeting of the panel of international experts who will review the CLSA protocol will take place in Ottawa. CLSA investigators will be provided with the opportunity to meet in person with the panel and respond to the issues they bring forward. | |
| March 2004 | Submission of the Final Approved CLSA Protocol |
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The CLSA protocol development team will submit the final approved CLSA protocol on March 31, 2004. | |
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Spring 2004 |
Priority Announcements: Population Genetics and Genetic Epidemiology of Complex Diseases |
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The CIHR Institutes of Genetics and Population & Public Health will take part in the Spring 2004 CIHR open competitions with priority announcements to fund fellowships and doctoral research awards to support young investigators in the area of population genetics and genetic epidemiology of complex diseases. | |
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March 2004 |
Submission of the Final Approved CLSA Protocol |
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The Canadian Longitudinal Study on Aging (CLSA) protocol represents eighteen months of work carried out by a team of more than 200 investigators from across Canada. The document details the various aspects of the CLSA, from study content and methodology, to management structure and financial estimates. The protocol describes the study's planned research into physical, psychological and social functioning, as well as topics areas such as genetics and biomarkers, quality of life, lifestyle behaviors and health services as they relate to health and aging in Canada. The overall aims of the CLSA identified in the protocol are to:
The protocol also provides detail on the planned 20-year follow-up of the cohort of 50,000 Canadian men and women aged 40 and older who will be recruited in to the CLSA. Individuals who agree to participate in the CLSA will be designated to either the "Comprehensive" or "Tracking" sub-cohort. Participants in the Comprehensive CLSA will be recruited from around the six regional CLSA centers to be established and followed with questionnaires, clinical examinations and biological testing. Those in the Tracking CLSA will be recruited from across the country and followed with computer assisted telephone interviews only. The two cohorts will produce the data needed to address complex analytical research questions, while also providing nationally representative information relevant for current and future policy at the national and provincial level. | |
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2004-2008 |
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The launch of the full CLSA is expected for 2008, to coincide with the Statistics Canada Canadian Community Health Survey. During the interim period from April 2004, pilot studies and preparation of scientific and logistical aspects of the study will be carried out to assess the CLSA methodology, measures and content. This will include aspects such as recruitment process and data collection, as well as a full pilot of the complete CLSA protocol. At its June 2004 meeting in Ottawa, CIHR's Governing Council was presented with the CLSA protocol and results of the international review panel and approved funding for the CLSA research team for the next two years of developmental and piloting work: $974,000 in 2004/05 and $770,000 in 2005/06. | |
