The Canadian Longitudinal Study on Aging (CLSA) has progressed from a vision initiated by the Canadian Institutes of Health Research (CIHR) Institute of Aging in 2001 to a federally funded national research platform in 2008. The development of the CLSA protocol was enhanced through a series of international peer reviews, a multisectorial Steering Committee, and a CIHR Ethical, Legal, and Social Issues committee; each was essential to the excellence of the science and to making the CLSA relevant to multiple sectors. The CLSA research team, led by three co-principal investigators (Kirkland, Raina, and Wolfson), has developed a unique protocol focusing on aging from cell to society, designed to follow 50,000 people aged 45 to 85, for 20 years. A strategic partnership with Statistics Canada has been crucial to the development and launch of the CLSA. The CLSA will contribute to our understanding of transitions and trajectories within an aging population, and will differ from longitudinal studies of aging worldwide through the breadth of its scope, the early age of recruitment into the study (age 45), the ethno-cultural diversity of Canada’s population, and the potential to link collected data to health administrative data at the provincial level. The CIHR is a novel longitudinal population-based study that will be an unprecedented research resource underpinning multidisciplinary research and evidence-based decision making in aging in Canada.

The Canadian Longitudinal Study on Aging has progressed from a vision initiated by the CIHR Institute of Aging in 2001 to a federally funded national research platform in 2008. The development of the CLSA protocol was enhanced through a series of international peer reviews, a multisectorial Steering Committee, and a CIHR Ethical, Legal, and Social Issues committee; each was essential to the excellence of the science and to making the CLSA relevant to multiple sectors. The CLSA research team, led by three co-principal investigators (Kirkland, Raina, and Wolfson), has developed a unique protocol focusing on aging from cell to society, designed to follow 50,000 people aged 45 to 85, for 20 years. A strategic partnership with Statistics Canada has been crucial to the development and launch of the CLSA. The CLSA will contribute to our understanding of transitions and trajectories within an aging population, and will differ from longitudinal studies of aging worldwide through the breadth of its scope, the early age of recruitment into the study (age 45), the ethno-cultural diversity of Canada’s population, and the potential to link collected data to health administrative data at the provincial level. The CIHR is a novel longitudinal population-based study that will be an unprecedented research resource underpinning multidisciplinary research and evidence-based decision making in aging in Canada.

Canadians are living longer, and older persons are making up a larger share of the population (14% in 2006, projected to rise to 20% by 2021). The Canadian Longitudinal Study on Aging (CLSA) is a national longitudinal study of adult development and aging that will recruit 50,000 Canadians aged 45 to 85 years of age and follow them for at least 20 years. All participants will provide a common set of information concerning many aspects of health and aging, and 30,000 will undergo an additional in-depth examination coupled with the donation of biological specimens (blood and urine). The CLSA will become a rich data source for the study of the complex interrelationship among the biological, physical, psychosocial, and societal factors that affect healthy aging.

Successful recruitment and retention for population-based longitudinal studies requires understanding facilitators and barriers to participation. This study explored Canadians’ views regarding one such study, the proposed Canadian Longitudinal Study on Aging (CLSA). Focus groups of participants ≥40 years of age were held in six proposed CLSA data collection sites (Halifax, Montreal, Hamilton, Winnipeg, Calgary, and Vancouver) to discuss participating in a long-term study of healthy aging. There was fundamental support for longitudinal research on health and aging. Altruism was a key motivation to participation, and universities were viewed as credible parties to conduct such studies. Participants had few worries about providing biological samples but expressed concern about potential misuse of genetic materials, commercialization of participant data, and privacy issues. These findings have already informed current, and will inform future, work on the CLSA, and will also provide useful information to researchers who undertake other population-based longitudinal studies.

The goal of the Canadian Longitudinal Study on Aging (CLSA) is to recruit 50,000 participants aged 45 to 85 years of age and follow them for at least 20 years. The sampling and recruitment processes for a study of this scope and magnitude present important challenges. Statistics Canada was approached to collaborate with the CLSA with the goal of determining whether the Canadian Community Health Survey (CCHS) could be used as a recruitment vehicle for the CLSA. In this pilot study conducted in 2004, it was determined that 63.8 per cent and 75.8 per cent of the respondents agreed to share their contact information and their survey responses with the CLSA, respectively. The most commonly reported concerns were confidentiality/privacy issues, lack of interest, and commitment issues. This pilot study identified some challenges to the use of the CCHS as a recruitment vehicle for the CLSA.

As part of its recruitment process, the Canadian Longitudinal Study on Aging (CLSA) will face the challenge of screening out individuals who are sufficiently impaired in their ability to provide informed consent. In the process of developing the design of the CLSA, a review of the literature was performed with the goal of identifying currently existing telephone cognitive screening tools that can be used to identify eligible study participants for population-based research on aging. We identified 12 telephone screening tools, four of which were based on the Mini-Mental State Exam (MMSE) and eight that were based on other face-to-face screening tools. Characteristics – including the constructs measured, the length of time for administration, the scoring/classification scheme, and any information regarding the validation of each tool – were extracted and summarized.

Biological specimen collection is an integral part of many longitudinal epidemiological studies. It is important to achieve high participant satisfaction for continuing involvement, and high sample quality for accurate biomarker measurement. We conducted a study to evaluate these issues on the sample collection proposed for the Canadian Longitudinal Study on Aging (CLSA). There were 85 participants recruited, and 65 attended either a hospital laboratory or private laboratory. Approximately 100 mL of blood and a random urine specimen were collected from each participant for a total of 2,108 sample aliquots. Quality standards were met for more than 90 per cent of samples and were similar for samples collected in both laboratories. More than 90 per cent of participants rated satisfaction with the collection as being good or excellent, and 84 per cent would be willing to repeat the collection in one to three years.

Standard clinical diagnostic procedures are often inappropriate and frequently not feasible to apply in population-based studies, yet ascertaining accurate disease status is essential. We conducted a systematic review to identify algorithms, criteria, and tools used to ascertain 17 chronic diseases, and assessed the feasibility of developing algorithms for the CLSA. Of the 29,616 citations screened, 668 papers met all inclusion criteria. We determined that the information included in a disease algorithm will differ by condition type. The diagnosis of some symptomatic conditions, such as osteoarthritis and arthritis, will require substantiation by clinical criteria (e.g., x-rays, bone density measurement) while other conditions, such as depression, will rely solely on self-report. Asymptomatic conditions, such as hypertension, are more difficult to ascertain by self-report and will require additional physiologic measures (e.g., blood pressure) as well as laboratory measures (e.g., glucose). This pilot study identified the tools necessary to develop disease ascertainment algorithms.

Une des clés au succès de l’Étude longitudinale canadienne sur le vieillissement (ÉLCV) sera de tirer profit des sources de données secondaires, en particulier données relatives à l’utilisation des soins de santé (USS). Pour examiner les aspects pratiques, méthodologiques et éthiques d’accéder à des données sur l’USS, des entrevues qualitatives individuelles ont été réalisés auprès de 53 administrateurs de données et commissaires/ombudsman à la protection de la vie privée à travers le Canada. Les participants de l’étude ont indiqué que d’obtenir la permission d’accéder à des données sur l’USS est généralement possible; cependant, ils ont noté que ce processus sera complexe et long, exigeant des travaux préparatoires considérables et méticuleux afin de s’assurer que la documentation soit appropriée et que le tout soit conforme aux variations juridiques ainsi qu’aux lignes, législatives et politiques.