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The Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) is a large-scale, public health study involving a representative sample of men and women aged 50 years and over living in Northern Ireland.

The primary objective of NICOLA is to collect longitudinal multidisciplinary data across a wide range of domains to be used for investigation and research relevant to ageing and making Northern Ireland a better place to grow old in.

NICOLA collects extensive information on all aspects of health, social and economic circumstances of ~8500 men and women as they grow older in Northern Ireland over a series of data collection waves approximately every 2-3 years.

Longer term research goals will investigate the determinants of retirement behaviour and economic wellbeing, the impact of cognitive function and sensory disability on decision making, the determinants of disability trajectories, the influence of social participation on these and the interaction of genetic, biological and psychosocial determinants on health and mortality.

There has been one sweep of data collection (2013 2016) and a second is currently underway (2017 – )

The Lifelines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy ageing. The Lifelines cohort distinguishes a children’s cohort (aged 0-18), an adult cohort (aged 18-65) and the elderly cohort (aged 65+). The protocol for these three sub-cohorts is largely the same, but focuses in part on the characteristics of the specific participant groups.

Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. Lifelines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of Lifelines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the Lifelines Research Office ([email protected]).

The Health 2000 Survey, carried out in 2000-2001 in Finland, was coordinated by the National Institute for Health and Welfare, THL (the former National Public Health Institute) in co-operation with an extensive network of organizations and experts. The aim of the survey was to provide information on major public health problems, their causes and treatment, health service needs and utilization as well as functional and working capacity. The data for the survey were collected in comprehensive health examination including blood sampling, in interviews and in self-administered questionnaires. The nationally representative sample included 8,028 persons aged 30 or over of whom 85% participated in the health examination conducted at 80 areas in the mainland Finland. In addition, 1,894 young adults (18-29 years) were invited to the health interview and fill in the questionnaire. Further, 1,278 people who had taken part in Mini-Finland Health Survey carried out in 1978-1980 were invited to the re-examination.

The follow-up of the Health 2000 Survey, the Health 2011 Survey, was carried out in 2011-2012. All members of the Health 2000 sample (n=8,135), who were living in Finland in 2011 and had not refused requests to be invited to further studies, were invited to the Health 2011 Survey. In 2011, they were at least 29 years of age. A total of 59% of them participated in the health examination conducted at 59 areas in Finland. In addition, a new random sample of young adults (aged 18-28, n=1,994) was taken. A total of 415 of them were invited to the health examination and the rest of them (1,579) received only the postal questionnaire. Further, 920 people who had previously taken part in the Mini-Finland Health Survey and invited to re-examination in 2001 were invited.

The Health 2000/2011 cohort is also continuously followed-up by linkage to Finnish nationwide registers.

The CARTaGENE (CaG) study is both a population-based biobank and the largest ongoing prospective health study of men and women in Quebec. CaG targeted the segment of the population that is most at risk of developing chronic disorders, that is 40-69 years of age, from six census metropolitan areas in Quebec. The sampling was stratified by age, sex and postal groups and is proportional to the density of the population in these areas. Over 43,000 participants consented to visiting 1 of 12 assessment sites where detailed health and socio-demographic information, physiological measures and biological samples (blood, serum and urine) were captured. Participants are followed-up based on linkage to governmental health administrative databases and direct reassessment through a web portal.

Last update 21/09/2017

Alberta’s Tomorrow Project (ATP) is a longitudinal study tracking the health of 55,000 adults aged 35-69 years in this western Canadian province. ATP was launched in 2000 as a prospective cohort research platform to study the relationship between environmental, lifestyle, and genetic factors and the incidence of cancer and chronic diseases.

In 2008, ATP joined a nation-wide research platform called the Canadian Partnership for Tomorrow Project (CPTP) representing more than 300,000 participants from five provincial cohorts: Alberta, British Columbia, Ontario, Quebec and the Atlantic provinces (Prince Edward Island, New Brunswick, Newfoundland and Labrador, and Nova Scotia). Together, the consortium of five regional studies provides greater statistical power for research, as well as opportunities to examine geographical trends in health and wellbeing across Canada’s vast landscape.

The information contained herein is specific to the ATP cohort.

Last Update 21/09/2017

The aim of GS: SFHS is to establish a large, family-based intensively-phenotyped cohort recruited from the general population across Scotland, as a resource for studying the genetics of health areas of current and projected public health importance. It aims to identify genetic variants accounting for variation in levels of quantitative traits underlying the major common complex diseases (such as cardiovascular disease, cognitive decline, mental illness) in Scotland.

Baseline data was collected at a single clinic visit. Longitudinal data is available by linkage to NHS medical records. Some participants are being invited to new clinic visits in 2015-17. This profile also includes scanning information from the Stratifying Resilience and Depression Longitudinally (STRADL) study to which approximately 1500 GS participants are being invited for scanning.

Last Update 21/09/2017

AWHS is a prospective, longitudinal cohort study based on the annual health exams of 5,688 workers of the General Motors Spain automobile assembly plant located in Figueruelas (Zaragoza, Spain). The study was designed to evaluate the trajectories of traditional and emergent cardiovascular diseases (CVD) risk factors (overweight, obesity, high blood pressure, diabetes, smoking, dietary habits or sedentary lifestyle), and their association with metabolic abnormalities and the prevalence and progression of subclinical atherosclerosis in a population of middle-aged men and women in Spain.

The specific aims of AWHS are:

1. To establish the research infrastructure required for a longitudinal cohort study, including setting up a biobank of repeated biological samples to conduct future assays in stored serum, plasma, whole blood, urine and DNA.

2. To identify new genetic, behavioural, and environmental determinants of the progression of adiposity and of the development of metabolic abnormalities and cardiovascular risk factors.

3. To characterize the prevalence and progression of subclinical CVD through non-invasive imaging techniques and their genetic, behavioural, and environmental determinants.

4. To interact with external investigators to promote the use of the study database and stored materials for ancillary studies and to disseminate the study findings to the scientific community, to public health authorities, and to the general public.

To collect data, factory workers undergo a standardized annual clinical exam, providing a clinical history, including clinical events and hospitalizations over the past year and current medication use, and undergo a physical exam, consisting of anthropometry (height, weight, and waist circumference), blood pressure measurements and heart rate, as well as laboratory assays, providing biological samples including serum, plasma, blood, urine and DNA. Data collection at the annual medical exams is conducted by the physicians and nurses of the Medical Services of General Motors Spain, who underwent training and standardization programs organized by the study investigators.

Each year, one random third of study participants 40 ﾖ55 years of age at baseline (n=2667) are selected for subclinical atherosclerosis imaging (Cardiac CT for Calcium Scoring, 2D ultrasound of carotid arteries, infrarenal aorta and femoral arteries), and for additional questionnaires of cardiovascular and lifestyle factors (dietary habits, sedentary, physical activity and sleep).

On September 2017, a substudy will begin with the aim of identifying early cognitive impairment in workers over 55 years of age, by using specific questionnaires and gene screening (Apo E).

Workers were excluded from the cohort if they have clinically overt CVD, or a major clinical condition limiting survival to <3 years at baseline. All laboratory procedures have been reviewed and improved to meet the ISO 9001:2008 standard, verified by an external audit.

Last Update 21/09/2017

The ADC was setup in 2004 by including all patients who come to the Alzheimer Center for diagnostic work up and who consent to give all data, collected as part of the routine diagnostic work up, for research. The aim is and was to facilitate research into new and existing biomarkers in the broadest sense, to establish diagnostic, prognostic and theragnostic values and further insight into the pathogenesis of neurodegenerative dementias. The data are collected on a weekly basis and consist of baseline data and annual follow up data. Since it is conception it has grown into one of the largest clinical databases in the dementia field. More info on setup, characteristics and data collection can be found in van der Flier WM, Pijnenburg YA, Prins N, Lemstra AW, Bouwman FH, Teunissen CE, van Berckel BN, Stam CJ, Barkhof F, Visser PJ, van Egmond E, Scheltens P.

Optimizing patient care and research: the Amsterdam Dementia Cohort. J Alzheimers Dis. 2014;41(1):313-27. doi: 10.3233/JAD-132306. PubMed PMID: 24614907.

Last Update 21/09/2017